exceptional family 2013

ExceptionalFamily KyExceptionalFamily KyExceptionalExceptionalFamily Ky

2013

A Kentucky Guidebook for People With Disabilities, Their

Families & the Professionals Who Support ThemCommonwealth Council

on Developmental Disabilities

A Speciality Publication of

of your life.

choice&control

Statewide ReSouRce LiStingS

310

2 www.lexingtonfamily.com

features

2013 “Exceptional Family Ky” is published by Lexington Family Magazine, Central Kentucky’s parenting publication.

138 E. Reynolds Rd. # 201 • Lexington, Kentucky 40517 (859) 223-1765 • www.lexingtonfamily.com • [email protected]

Editor..........................John Lynch of Lexington Family Magazine

Graphic Artist.......Daniel Morgan of Lexington Family Magazine

-- Mission of The Commonwealth Council on Developmental Disabilities

In Their Lives.”

“All Kentuckians Have Equal Opportunity

To Choice & Control

ExceptionalExceptionalFamily KyExceptionalFamily KyExceptionalExceptionalFamily Ky2013

16 A Helping HandAssistive Technology Opens Doors

18 Trust in the FutureAttorney Helps Families With Special Needs

20 Woman’s Best FriendIt’s a Service Dog Named Graham

24 Shane’s StoryStopping Restraint & Seclusion in Schools

26 Triumph & TechnologyMom Starts Bluegrass Technology Center

6 Innovation & ChangeCCDD Draws Strength From Its Diversity

8 Labor of LoveFoster Family Raises Medically Fragile Kids

Go Girl Go Marlana VanHoose of Johnson County charms all she meets – including the UK women’s basketball team – with her remarkable singing voice.

30 Long & Winding RoadSon With Down Syndrome & Autism

29 Cardinal Hill HospitalPatients Benefit From Continuum of Care

34 Resource Directory310 Resources Across the State

12

32013 Exceptional Family KY

I am proud to serve on the Common-wealth Council for Developmental Disabilities.

The Council serves Kentuckians with Developmental Disabilities, which at 23% of our population is the largest minority in Kentucky.

The CCDD encourages and empowers people with developmental disabilities to be self-advocates, maintain full inclusion in the community and enhance their daily quality of life through systematic change.

Our current five-year plan is focused on education, health, employment, quality assurance, and formal and informal supports for people with developmental disabilities.

Each of these areas has multiple specific goals in place to achieve our mission:

“To create systemic change that empowers individuals to achieve full citizenship and inclusion in the community through education, capacity building initiatives and strategic advocacy.”

I am the mother of two beautiful girls, Sydney (age 11) and Sadie (age 9), each with unrelated genetic mutations causing developmental disabilities, Dravet syndrome, Autism, epilepsy, ataxia, apraxia, severe learning delays and the need for 24/7 medical care.

Through my efforts to provide the very best care and quality of life for my girls, I found fabulous help, support

as the Chair of Council Affairs, and I am honored to be involved with this

amazing group of 26 dedicated members and its staff.

I’m excited to participate as our efforts unfold in keeping with our vision:

“Communities that fully engage, support and provide equal opportunity for each individual to pursue the American dream

as a fully integrated, valued and contributing citizen.”

Info: www.chfs.ky.gov/ccdd/You can learn more about Dina, her

children, Apraxia and Dravet syndrome at www.hopeforsydney.com. Y

and creative resources through the CCDD.

Prior to being on the CCDD, my children (and I) benefited from financial support used to further educate myself on how to care for them.

The Future is Now, an in-depth training series that teaches long-term planning for loved ones with disabilities, provided me the skills needed to plan for my girls’ futures.

I found the CCDD advocacy training and disability conferences to be a wealth of information that taught me skills that will last a lifetime.

Since becoming a part of the council I have been blessed with the experience and expertise of many mentors and new friends who understand me, as a parent of children with special needs.

After seeing the invaluable service that is implemented by CCDD, I was inspired to learn how I could be a part of the team.

I am newly elected

An individual who has a developmental disability and/or a family member or guardian of an individual with a developmental disability may apply to be on the Commonwealth Council on Developmental Disabilities. Council members are expected to attend regularly scheduled quarterly meetings that last two to three days. A member serves a three-year term and is limited to six consecutive years of service.Info: http://chfs.ky.gov/ccdd or 1-877-367-5332.

how to become a CCDD member

Letter from theDina Nelson

The mission of the CCDD is to empower individuals to achieve full citizenship and inclusion in the community through education, capacity building and advocacy.

Chair of Council Affairs

C C DD


In 2009, the Commonwealth Council on Developmental Disabilities began the Recreation Involvement Fund. This fund was established for individuals with developmental disabilities to attend community gyms, such as the YMCA, and enroll in sporting activities like swimming or baseball.

Along with the obvious health benefits, it is the Council’s hope that people using the fund also begin to integrate themselves into the community by forming new bonds with people that they would not otherwise have met. It is also the Council’s hope that non-disabled individuals who may not ordinarily be exposed to people with developmental disabilities will discover that “these people” are not unlike themselves.

To apply for the RECREATION INVOLVEMENT FUND

Please visit our website

chfs.ky.gov/ccdd

recreationEVERYONEis

for


Meet the CCDD...

In Front: (left to right): Joe Cowan, Marie Braun, Tina Jackson, Julie Steinman and Stephanie Sharpe (Chairperson)

Standing (left to right):Donna Koons, Christel Hockensmith, Debi McMurray, Lynn Flynn, Eric Wright, Dina Nelson, Sandy Fawbush, David Minor, Missy McKiernan, Colleen Payne, Harold Kleinert, Oyo Fummilayo, Margaret Reed, Melanie Tyner-Wilson, Dave Matheis and Janelle Turner

The mission of the Commonwealth Council on Developmental Disabilities is to create change through visionary leadership and advocacy so that people have choices and control over their own lives.

In 2001, the council began operating under a new five-year plan based on nine areas of emphasis outlined by the Developmental Disabilities Assistance Act.

These areas of emphasis are used to fulfill the purpose and intent of the DDA and the mission and vision of the council.

Beginning in 2011, the council began operating under a new name, the Commonwealth Council on Developmental Disabilities, to better reflect its role in the commonwealth. t


As Executive Director of the Commonwealth Council on Developmental Disabilities, Pat Seybold relishes her job in part because she gets to ask and consider provocative questions.

Like questioning the relationship between people with disabilities and government services.

Advocates naturally insist that services meet the needs of all in the community. Seybold agrees but also wonders whether government intervention has caused some people to become more disenfranchised.

“How can people participate in communities when they have government strings attached?” she asks.

“Our job is to ask these questions and have the necessary conversations. It may not always be pretty, but those conversations have to happen in order to move the system forward.”

Which is the mission of the CCDD.The CCDD is part of a federal

program that traces its roots to the

1970s. The mission is to ensure that government services continue to be innovative and useful.

Each state Council receives federal grants and matching state funds. Council members are appointed by the governor but answer to no government agency.

Seybold, the executive director for the past 13 years, is a state employee but answers only to the Council.

“This allows Council members to drive what we do,” Seybold said.

And that’s the exciting part. Under Seybold, the Council has developed a reputation for fairness, a willingness to work with anyone and for instituting cutting-edge programs, including:t Golden

Alert-D Passed in

2012, Golden Alert-D informs 911 operators, first responders, the media, search and rescue teams, and the public that a missing person – regardless of age – has a disability.

This allows responders to expand the information they need to know about the missing person. (Please see story on facing page).t Kentucky Assistive Technology

Fund Started in 1998 with $120,000 in

seed money, the fund that provides low-interest loans for assistive

technology has swelled to $2.3 million. (Please see story on Page 17).t Adult Abuse RegistryInitially targeted at the elder

population, the registry would also help protect adults with disabilities from abuse in all areas.

Despite setbacks in the Legislature, Seybold and the CCDD continue the uphill battle to make this registry law.t Employment ProjectBecause people with disabilities start

their own businesses, the business ownership project has become a regular part of the state Office of

By John Lynch

I have wonderful relationships with Council members who bring diversity to each question and always have me thinking.

Vocational Rehabilitation. “These are the outcomes we like

because they have lasted,” Seybold said.t Emergency PreparednessIn the wake of Katrina and

Superstorm Sandy, it became apparent that people with disabilities and first responders weren’t on the same page.

Through various conferences and networking, the CCDD brought the two groups together to share information and break down barriers.

Change

Pat SeyboldCCDD Executive Director

Innovation & CCDD’s Cutting Edge Programs Emerge From Group’s Creativity & Diversity


“The ‘aha’ moment came when I saw a firefighter in a conversation with a person in a wheelchair,” Seybold said.

“Both of them realized that they viewed the world from different perspectives. It’s wonderful when we can normalize that situation.”

Seybold is energized by the Council’s willingness to be innovative, creative and to

take risks. And the Council derives its strength from its diversity.

“I have wonderful relationships with Council members who bring diversity to each question and always have me thinking,” she said.

The goal is to fashion a world where differences are embraced and all citizens are treated fairly.

Said Seybold: “That’s what I would love to see. You have differences but you’re no different than anyone else.

“One day I hope we get there.” Y

Have you ever thought about what would happen if your loved one was missing?

It is not something that most of us would like to consider, but for families and friends of individuals with intellectual and/or developmental disabilities, that thought can be alarming.

To address this concern, Debby McMurray, a member of the Commonwealth Council on Developmental Disabilities, along with other advocates, successfully secured legislation in 2012.

The result is Golden Alert-D, which is specifically designed to alert 911 operators, first responders, the media, search and rescue teams, and the public that the missing person – regardless of age – has a disability.

The CCDD has been involved in ensuring that individuals with disabilities and their families are provided needed supports and services during times of crisis and disaster.

This includes providing on-going education for individuals who provide the needed supports and services following a disaster, whether it is an emergency responder, a shelter worker, or a search and rescue team.

CCDD also provides education to individuals with disabilities and their support network on being prepared and what to do if a disaster or crisis occurs. If you know of a group that would be interested in a presentation, please call the Council at (877) 367-5332 and ask for Shelley.

Golden Alert-D Aids Searchers When Person With Disability Goes Missing

For more information, contact theYMCA of Central Kentucky at

859-367-7355 or [email protected].

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Sauerbeck Family Has Raised More Than 100 Foster Children – Most of Them Medically Fragile By Sally Sauerbeck

Labor ofLove


Love for others motivates us to take risks and surmount challenges that we would never dare take on otherwise. Sometimes life’s most important choices are made with the heart, not the brain.

Dave and I fell in love, were married, and 33 years later we marvel that we are still so extremely compatible.

Our decision to spend the rest of our lives together was made with our hearts.

Neither of us had any idea that we were destined to have an impact on the lives of more than 100 children, almost all of whom have been medically fragile, through foster care.

We became a foster family right after getting married and our four wonderful sons grew up with foster siblings.

We are extremely proud of each of them and our daughter-in-law.

We have been blessed with three of the most beautiful grandchildren God ever created (Grandmas can say that)!

These things I could have predicted. I knew Dave would be a wonderful father and expected that parenting normal, healthy children would come naturally.

The foster care was a surprise.I am a Registered Nurse and Dave

is a physician assistant and we live in Louisville. It seems that even before

we met, our medical training was preparing us for the role we now play.

Dave and I have had the distinct privilege of caring in our home for children with almost every medical condition that you could imagine.

We have had several children with fatal diagnoses, but somehow all but one has survived.

The child who died while in our care had been living with his family in a car. He had missed many of his medical appointments.

When he came into our care, his leukemia was too far advanced to reverse.

It was enough for us to know that in the end he was loved into heaven and passed happy and comfortable.

In our home now, we have a child whom we adopted. He came to live with us when he was

7 weeks old. He had a congenital malformation of his leg and tumors in his liver and lungs.

When he was 3 years old we considered his next course of chemotherapy and asked his doctor for the prognosis

“I didn’t think he would live to get out of neonatal intensive care,” she said. “I never dreamed he would have a first birthday.”

He celebrated his 11th birthday last

August. He is a typical fifth grader, has a wonderful sense of humor and is the first to tell a good joke.

We also have a foster daughter who was born with multisystem anomalies. She

underwent open heart surgery in the first few months of life and was on a ventilator until she was 2 years old.

Few expected her to overcome those obstacles. But she is now 7, off the ventilator, rides the bus to school every day and is the happiest child you will ever meet.

Another foster child we have was born prematurely and has had an extremely tumultuous start to his life.

When we met him, he already had liver disease and severe, short gut syndrome that causes malnutrition because of inadequate bowel length.

Now 3, he received a wonderful Valentine’s Day present when he received a multiple organ transplant in

“…if I have all faith so as to move mountains, but do not have LOVE, I am nothing…” 1 Corinthians 13:2

Of the many life lessons that I have learned, “Love Motivates” is probably the most significant lesson for me.

Foster Parents Needed For

Children Who Are Medically Fragile

After reading this inspiring article if you would like further information regarding fostering or adopting a medically fragile child, please call the Cabinet for Health and Family Services at 1-800-232-KIDS(5437). The Cabinet provides many resources, including training, medical coverage and a per diem to assist families. The Cabinet is fortunate to have community partners such as the Commission for Children with Special Health Care Needs and the University of Kentucky Training Resource Center to assist with supporting medically fragile families.


Cincinnati and is doing exceptionally well. He had been on the wait list for over a year.

Nearly two years ago we were told that he could live only a few months without a transplant.

But guess what? He amazes us every day with his wonderful disposition and desire to overcome these complications!

How do you explain the ability of these children to beat all odds? Do I believe in miracles?

Yes, definitely!Do I recognize the importance of

the child’s determination and a strong will? Always!

Do I think that it is an accident that theses specific children are in our home? No, never!

Do I think that Dave and I have just the right combination of skills that each of these kids need? Yes, certainly.

God will provide. But even taking all of this in account, that is more.

I strongly believe that “Love Motivates.” The love that these children give to us motivates us to continue doing what we do.

It is that huge smile on their face, even when they are nonverbal, that says I love you, thank you for caring for me.

And in return, it is our love for them that motivates them to fight for life and gives them the extra boost to overcome the odds.

These children could receive all of the necessary medical care they need, without a family, in a hospital or residential facility.

I have the utmost respect for the highly skilled physicians and nurses that provide care there. Believe me, we could not keep either of our children alive and well without them.

But they cannot provide the lap time or the cuddle-at-night-because-I-don’t-feel-well time that we provide.

Kids know how to read your heart. They know when they are loved enough for someone to be there, someone to advocate for their needs.

This is necessary so they can reach their ultimate potential.

This is the role of foster parents.Currently, there are an increasing

number of medically fragile foster children coming into care.

Dave and I have noticed more and more requests to care for children with drug related issues.

Sometimes children are born with a drug addiction that requires special medication and monitoring.

Sometimes children have simply been neglected due to their parents’ drug use.

We recently had an 18-month-old child with burns from a drug-related fire.

There is also an increase in the number of children with other

A Plea From the HeartThe following is

an excerpt from a Letter to the Editor to a local

newspaper by Philip Sauerbeck when he was 16 years old.

It saddens me to hear that another child is a victim of abuse, neglect or any other kind of mistreatment.

There are foster children from one to 18 years of age who need our help in finding a home and people to love.

This is a major problem, but like all problems it has a solution – Take care of these kids by becoming a foster parent.

You can help these children by fostering them with love, giving them opportunities, and sharing a vision of

what a loving family is like.I am not a foster parent but a

foster brother. My parents take in foster kids all the time...

... My parents took in foster kids. since I was 3. The experience has indeed rubbed off on me, and it has probably made me a better brother, and it will probably make me a better parent.

Through my years of foster care I have learned that the world is a rough place, and even rougher for some.

I have also learned that it is good to have a family to bank on when you fall, and it is a great feeling to know you are that family.

Phillip Sauerbeck Hazelwood Road

“…So faith, hope, love remain, these three; but the greatest of these is LOVE.” 1 Corinthians 13:13

sauerbeck family

conditions, especially diabetes. Children enter into care with a wide

range of severity to their conditions. It is possible that foster parents

without a medical background can gain a medically fragile status and care for many of these children.

No, it’s not always easy. Friends ask me, “Have you lost your mind taking on these sick kids?”

I say, “No, I made this decision with my heart.”

So, I challenge you to let your heart assist you with a very important life decision.

For both your life and the life of a child, contact social services and get information on becoming a medically fragile foster home.

LOVE MOTIVATES. Y


ALL Kentuckians Have Equal Opportunity To Choice & Control

In Their Lives

Commonwealth Council on Developmental Disabilities100 Fair Oaks Lane, 4E-F Frankfort, KY 40601

877.367.5332 • 502.564.7841 • http://chfs.ky.gov/ccdd

This council is Governor appointed. To apply please visit http://chfs.ky.gov/public/boards/

or contact our office for an application.


By Teresa VanHoose

Marlana VanHoose of Johnson County Brings SunshineTo All With Her Exceptional Singing Voice

Members of the UK women’s basketball team gather around Marlana VanHoose after the teenager from Johnson County sang before a Wildcat game last season.Go

irl Go

Blind Since Birth,

Marlana VanHoose, a 17-year-old from outside Paintsville, is a very unique

little lady. She was born with Cytomegalovirus, a virus believed to have caused her to be totally blind.


She also has mild cerebral palsy and stopped growing at the age of 9. Marlana

wasn’t expected to live after one year, but God had other plans.

Before she could talk she was humming “Jesus Loves Me.” Marlana started playing the piano at age 2. We knew before she was a year old that music was her passion and that God had placed a special anointing on her.

Because of her developmental delays and sensory integration disorder, Marlana participated in the First Steps program at 9 months and continued until her third birthday.

We let her attend Head Start for two years in our local school for socialization skills while she continued her therapies, which included visual impairment and orientation and mobility services.

Marlana enjoyed going to school. Since she was a toddler, Marlana

would lay on our kitchen floor and sing all the time, mostly gospel songs that she had learned from her grandparents.

school system had no vision impairment teacher, so she attended the Kentucky School for the Blind, all the way in Louisville.

We really struggled with the decision.

Should we send our 5-year-old daughter three hours away to get the crucial instruction she needed or keep her home and let her attend regular school without a VI teacher?

We had already visited KSB and stayed a couple of nights with Marlana for evaluation purposes when she was 4.

The school has dorms with dorm parents, so I made another visit and interviewed the dorm mother.

That reassured me and convinced us to send her to KSB.

Marlana would leave on Sundays, riding the local school bus, and come home on Fridays.

We drove her to Louisville the first Sunday and when we left she said, “Bye,

mommy.” Marlana loved the school, but that

first day was the hardest for me. I called her every night.

Marlana attend KSB full time for one year and returned for a week each semester all through elementary school to work on specific skills.

She’s now a junior at Johnson Central High.

Marlana was 6 years old when she did her first talent show singing

“First Time Ever I Saw Your Face,” by Roberta Flack. She did really well and got Honorable Mention. Since then she has sung on stage numerous times.

I took her to her first concert when she was 3. We saw the Oak Ridge Boys at the Mountain Arts Center in Prestonsburg.

Marlana always loved the song “Elvira.” I remember telling her at the concert that someday she would be on that stage.

I was right. She started singing with the Ky. Opry Jr. Pro’s at the age of 10 on that very stage and performed there for seven seasons, learning so much musically as well as socially.

Starting at the age of 9, Marlana has recorded CDs – five of them in total. Marlana enjoys singing current and oldies music, but her true passion is gospel.

She started singing at different churches at the age of 9.

We get calls all the time from people wanting her to sing. She has performed all over Kentucky, including at a UK women’s basketball game, Keeneland and WLJC (a gospel

Marlana VanHoose was 6 when she entered her first talent show and has been singing all over Kentucky since.

Since she was a toddler, Marlana would lay on our kitchen floor and sing all the time, mostly gospel songs that she had learned from her grandparents.

At that time I wasn’t a Christian. I didn’t grow up in church. I always loved listening to music, mostly the current music and the oldies.

When I would play my favorite music, I could tell when Marlana loved a song.

She would have the biggest smile on her face and be really bouncy.

When Marlana turned 5, our local

marlana vanhoose


music TV station). Her singing has earned Marlana

many awards, including “Youth of the Year” and “New Artist of the Year,” through the Artists Music Guild in Fort Mill, South Carolina.

Marlana has played the piano and sung since she’s been very young, but she had a hard time doing them together.

Some visiting churches would want her to do a 30 minute show, Marlana has had trouble with her feet and legs due to the cerebral palsy and had trouble standing that long.

So at the age of 13, someone gave her a nice keyboard and she practiced a lot playing by ear, no lessons.

She can play almost anything after hearing it once or twice. God made a way for her to sit as she sings.

Now at the age of 17, Marlana is and has been an inspiration to so many people including me.

She helped me to become a Christian and has taught me many things.

To Marlana’s way of thinking, she does not have a disability.

Her many different challenges are just everyday life skills to her. She never complains about any challenges.

We’ve always been open and honest with her. We always joke around with her about her blindness and she jokes right back about it.

Marlana never sees (the way she sees through all her other senses) a stranger, she loves meeting people, and the feeling seems mutual.

Despite her blindness, Marlana has experienced much in her 17 years.

She has ridden a bike, she “watches” TV and she has even driven a vehicle several times with a little help from her friends and family.

I devised a driving permit written test, and she scored 92%.

Marlana always gives her testimony and one thing she says is, “I don’t want to see on this earth. I’ll see when I get to Heaven.”

My journey with Marlana has

been special, moving, inspirational, entertaining and loving.

God has blessed me with a wonderful family with Marlana’s dad, David; Marlana, and her 14-year-old brother, Harley.

Never a dull moment in our house. Y

Marlana VanHoose with her dad, David; brother Harley; and mom, Teresa

marlana vanhoose

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My name is Lanny Taulbee and I was diagnosed with Juvenile Rheumatoid Arthritis at the age of seven. I am 57 years old, 4’-4” tall, with extremely limited range of motion.

The short stature is due to steroids given for the arthritis when I was a child. I use crutches, scooters and

had, not because of my disability, but because of the limitations others placed on me because of that disability.

I learned early-on to “accept the things I cannot change, to change the things I can, and the wisdom to know the difference…” as the old saying goes.

But that does not mean that I can’t wish for or dream about obtaining something I know would make my life easier, better or safer.

For years I watched as technology exploded with so many assistive devices that would make my life so much easier – gadgets and gizmos, computers, cell phones, laptops, roll-in showers, ramps for the home and even

power chairs for mobility. I’ve had a severe disability for over

half a century! Yes, like you, people with severe disabilities do get older.

I have been chasing the dream of independence for decades. I grew up knowing that I would not have the same opportunities everyone else

No matter how knowledgeable one is regarding disabilities, there is always a new product or service out there to make things easier, better or safer for those of us with severe disabilities.

(Monetary)Assistive Technology Loan Opens Doors (And Roads) for Longtime State Worker

By Lanny TaulbeeA HelpingHand

n


ramps to get in and out of vans…If only!?! But, what about the cost? How

could I afford to get those assistive devices or that van with the ramp on the side?

I navigated through a tangled maze of SSDI, SSI, Medicare, food stamps, this program and that program.

I explored every avenue seeking out possibilities that would make things easier for me and those around me.

In 1998, I discovered how I could purchase my own home through the Kentucky Housing Corporation and how I could have it modified to meet my needs by accessing various housing programs.

In 2005, another seeming impossible dream was realized. I was hired as the Disabilities Coordinator for the Kentucky Commission on Community Volunteerism and Service.

All of my past experiences with disability support services suddenly became a vital resource to assist others with disabilities.

As I transitioned from receiving disability income to gainful employment, my physical activity increased dramatically.

I needed – more than wanted – new technology.

For those of us with severe disabilities, questionable credit scores and limited funds, getting that technology can prove to be a daunting task.

Because my needs were primarily employment related, the Office of Vocational Rehabilitation provided a power chair and could offer modifications to a van once I purchased one.

That’s when I learned about the Kentucky Assistive Technology Loan Corporation.

The KATLC has made owning that assistive equipment possible.

Even though this funding is in fact a loan, it is more flexible than

standard bank loans with generally lower interest rates and often longer payment terms meaning smaller, more affordable monthly payments.

Finally, it was possible to have my very own van with the fold-down ramp and power chair.

I soon realized that I needed a safe way to get from my house to the detached garage when using crutches during inclement weather.

Again, I was able to utilize the KATLC process to meet my mobility needs.

That was more than seven years ago. The loan for the van has been repaid and I am in the process of paying off the second loan.

As the years go by and age takes its toll, new assistive technology and mobility devices are becoming more essential to my career and my quality of life.

I am now employed as the Physical Disabilities Advocate for the Department for Aging and Independent Living within the Cabinet for Health and Family Services.

In this position, I am able to continue assisting others with disabilities by drawing upon my past experiences with so many programs and services.

Thanks to the Kentucky Housing Corporation, the Office of Vocational Rehabilitation, KATLC and many other supports and services for making the seemingly impossible possible.

I am excited to be able to share my story with you and hope it will inspire you to think outside the box and use whatever supports and services available to you to improve your quality of life.

Although not everyone qualifies for a KATLC loan, it is one possibility that might change your life forever.

It certainly has made a huge difference for me! Y

The Kentucky Assistive Technology Loan Corporation offers low interest loans for qualified applicants with disabilities who need assistive technology. Working with its lending partner, Fifth Third Bank, KATLC can provide loans for modified vehicles and hearing aids to adapted computers and mobility devices. Established by state statute in 1996, KATLC is governed by a seven-member Board of Directors, four of whom must be people with disabilities. The Board reviews all loan applications. In 1997, KATLC received its first grant of $107,000 from the Kentucky Developmental Disabilities Planning Council (now Commonwealth Council on Developmental Disabilities). KATLC made its first loan in the summer of 2000. Another $125,000 grant from the DDCC followed in 2002 and KATLC has also received federal grants of $1.2 million over the years. An annual allotment of state general funds pays for operating expenses. The Kentucky Office of Vocational Rehabilitation currently provides the staff support to the Board and KATLC. KATLC has now provided more than $8 million in loans to Kentuckians with disabilities to enable them to get the assistive technology they need, making it one of the most active assistive technology alternative financing programs in the nation. Info: Kentucky Assistive Technology Loan Corporation, 275 East Main Street, Mail Stop 2 E-K, Frankfort, KY 40621. (877) 675-0195 (Toll Free) and http://katlc.ky.gov. t

KATLC: $8 Million In Loans to

Kentuckians

lanny taulbee


I was standing in front of Grand Central Station in New York when I got the call I knew would come eventually.

My 85-year-old client in Lexington had succumbed to a coronary, and the estate plan we created four years earlier was already moving to protect her middle-aged daughter who suffered from a lifelong total disability.

First, the emergency squad easily found my number taped to the telephone.

I contacted our geriatric care manager and requested she secure an interim caregiver while we negotiate with Medicaid to provide housing under a waiver program.

But the most important element in our plan was a Special Needs Trust included in her mother’s revocable living trust, because it held the loving mother’s estate in trust for her daughter and helped preserve her SSI and Medicaid eligibility.

A Special Needs Trust, also known as Supplemental Needs Trust, can be the most important part of a parent’s estate plan documents when the surviving child is receiving a “needs based” public benefit such as Medicaid or SSI (Supplemental Security Income).

Assets held in a Special Needs Trust are “exempt” from being considered “available” for eligibility purposes.

In most cases, a child with a

disability who inherits an estate valued in excess of $2,000 directly from a parent will lose her eligibility for Medicaid or SSI because the inheritance puts her over “resource” limit.

There are two basic design differences in Special Needs Trust planning.

First, a Third Party trust can be set up with funds that come from sources other than the disabled individual.

The trustee must have total discretion on distributions for the beneficiary.

Typically, this is a parent leaving a support trust for their child.

Second, a First Party trust can be created with funds already belonging to, or inherited directly by, the disabled individual in order to qualify for or preserve existing Medicaid and/or SSI

benefits. This trust is authorized under

Social Security laws at 42 U.S.C. 1396p (d)(4)(A) and can only be created by a parent, grandparent, guardian or court order.

The key difference is an important one.

The “first party” trust, because it is created with funds belonging to the beneficiary, must provide that once the trust terminates either by the death of the beneficiary or by dissolution, Medicaid is reimbursed any funds spent on behalf of the disabled beneficiary before any other remainder beneficiary can share in the distribution.

Anyone hoping to pass a legacy to an individual with disabilities receiving Medicaid and/or SSI benefits should consult with a qualified Special Needs Attorney to assure that their estate plan includes a Special Needs Trust to protect those benefits. Y

Estate Planning for Those With Special Needs

Robert L. McClelland is an elder law attorney and guardian in the Lexington firm of McClelland & Associates, PLLC. He is a member of the Special Needs Alliance, a national alliance of special needs attorneys who focus their practice in benefits planning and caring for those with special needs family members. Contact him at: McClelland & Associates, PLLC1795 Alysheba Way, Unit 2102Lexington, Ky 40509 / (859) 543-0061 / www.Lexingtonelderlaw.com

By Robert McClelland

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Friend By Gail Vanover

Woman’sBest

Graham, a Teddy Bear-Like Service Dog, Opens Up Whole New World For 68-Year-Old Retiree


like shopping, eating out, walking outdoors or traveling without the constant fear of encountering an obstacle that I cannot master.

He is my helping hand. He is there as a brace support when I do have to get up from the floor.

One incident occurred when I fell in my barn and had to crawl 25 feet to get to a gate to help me get up.

Now with Graham at my side, that will never be a problem again.

He also allows me to get to the floor safely so I can enjoy things like playing with my granddaughter.

In all, he can perform 27 tasks for me, including getting the phone, finding help and returning with them, picking up the things I drop and paying the cashier.

Like many of you, I had associated Service Dogs with guide dogs for the blind. But then my friends suggested the services of one for myself.

I researched on the Internet and discovered there are several different types of Service Dogs.

I walk slowly so that I can concentrate on keeping upright. Joys like walks in nature and horseback riding are next to impossible.

While this condition will never change, my world has opened up in a way I never thought it would when Graham came into my life.

Thanks to his special training, I can now do those things I once thought impossible.

Graham walks by my side to help me with my balance so I may walk faster.

A stroll through the woods does not worry me.

He also braces while I reach up for items he cannot reach and he retrieves items from lower shelves.

He also provides support when I bend over to look at something.

He even carries things for me when I have one hand full and the other on his harness.

Unlike my kids when they were little, he picks up his own toys and puts them away.

Graham is many things for me.

A friend, companion, and the key to a richer life and access to the freedoms I missed

Hello, my name is Gail and I am 68 years old,

retired now after I worked as a finance military pay technician for 21 years.

I would also like to introduce my special friend, Graham, a specialty trained Brace/Mobility dog, who is 2 years old and, yes, new to his vocation.

He wears a harness specifically designed for our use. It gives me a handle to hold to assist with my balance.

My disability does not have a name and its cause happened so far back that a diagnosis is an impossible feat.

I suffer from a severe balance problem that limits my ability to do certain things and go certain places.

My kids often tell me that if I were stopped by the police and given a field sobriety test, I would end up in jail.

This problem is one I have had since childhood and, although it started as a minor inconvenience, it has grown worse over the years.

Stairs and curbs are problems because I lose my balance easily. Even bending over or reaching up high can be difficult.

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Info: Kentucky Working K-9 Academy2856 Lilac Road, Leitchfield, Ky. 42754(270) 259-3647www.kentuckyworkingk9.com

With Graham by her side, Gail Vanover has increased her mobility, even taking her service dog on a visit to New York.


They aid in all types of things ranging from seizure, asthma, heart conditions, autism to PTSD as well as different types of mobility problems.

These dogs are all highly trained and can go safely anywhere the public can.

My service dog and I are welcome at stores, restaurants, movie theaters, schools, churches and hospitals.

Graham even accompanied me to an outpatient surgery.

Service dogs are even allowed on public transportation, including airplanes.

With Graham at my side, I recently completed a trip to New York to visit my son and his family.

Graham does require good quality food to help him to perform his various duties.

He was raised by a “puppy raiser,” a person who takes care of service dogs in their early years.

Often, puppy raisers are volunteers. Graham stayed with his puppy raiser

until he was approximately 18 months old.

During that time he was taught basic obedience skills, exposure to the public and how to act in public.

This teaching is an important foundation when the professional trainer steps in for the specialty training that will take an additional six months.

When Graham finished his puppy raising time, my vet recommended Tammy Nugent of Kentucky Working K-9 Academy in Leitchfield for the specialized training.

This step is extremely important and care should be shown in choosing a trainer that is good and reasonably priced.

Research, research, research.You do not buy the first car you

come to on a car lot, so you should not get the first trainer you find.

Consult your vet or other reliable

sources for recommendations.When talking with a trainer, make

sure to request testimonials from previous clients.

A Service Dog can be an expensive investment ranging from $5,000 to $30,000 depending the training needed and the trainer.

Most trainers can work with you or at least offer ideas to raise the money you need.

Despite the cost, the effect a Service Dog can have on someone’s life is worth it.

When I am out with Graham, people often approach us and attempt to pet or talk to him because he is cute and looks like a Teddy Bear.

This causes problems for me because Graham’s concentration is disrupted.

While I appreciate the fact that Graham is so approachable, he is a working stability dog and I need his full attention on me.

Please remember when you see a Service Dog on duty with its handler, do not talk, touch or even make eye contact with the dog.

We are not being rude but these Service Dogs are working and distractions can be dangerous for the handler, some of whom are children.

Do you want someone tapping on your doctor’s shoulder while he is operating on you?

These Service Dogs use their senses to keep an eye on us.

For me, Graham concentrates on my pressure on the harness or unevenness of my step.

Lastly, keep in mind that not all Service Dogs wear bulky harnesses, but also vests denoting them as Service Dogs.

I expect to enjoy my new found freedom and Graham for many years to come.

For this I thank the puppy raiser, my trainer and all the places of business that were helpful in Graham’s training process. Y

At the grocery store, Graham, Gail Vanover’s service dog, can carry packages, grab items off lower shelves and support her as she reaches for higher items.


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Shane was your typical little boy. He loved playing with trains, riding his big wheel and playing with his sisters.

When he finally got to attend pre-school he couldn’t wait to get to class. He flourished and received the “sponge” award because he seemed to absorb everything they taught.

Toward the end of pre-school, the first signs of Shane’s disability were beginning to show. He became increasingly frustrated and refused to work.

By the time he was 5 and in kindergarten he was being seen by a doctor and a therapist.

He was diagnosed with Obsessive Compulsive Behavior, Post Traumatic Syndrome due to experience he had earlier in his life, and an Emotional Behavior Disorder, which later was identified as Asperger’s.

Plagued by frustrations in school, he broke pencils and crayons, threw them to the floor and tore his paper.

The school’s way of handling these behaviors was to restrain him and place him in a time-out room, which was a transformed utility closet.

It seems the more the school would use restraint and seclusion, the more afraid and frustrated Shane became and the worse his behaviors became.

At one point, he refused to do work, turned over chairs and argued with teachers.

Academically, Shane was an excellent student and blended in with the other students.

This seemed to make it hard for the

school to accept his disability. They chose instead to treat him as having compliance issues.

Eventually, an Admissions and Release Committee meeting was set up to develop an Individual Education Program for him.

Even though we did not want Shane restrained, it was included in his Behavior Plan by the school system.

We were told the school needed this tactic to allow teachers ways to handle him if he became a physical threat.

The restraining and seclusion continued.

Each time the use of seclusion or restraint is initiated on a student, schools are required to complete a Crisis Management Report.

This report is to document the events leading up to the restraint or seclusion along with the steps taken during the event.

From the information included in these Crisis Management Reports, it was our conclusion that the restraining and seclusion were used as

Ekron Family Fights Battle

To Stop Schools From Restraining

GrandsonBy Janet Board

hane’s tory

Shane & his niece Claire


S


It took the help of Protection & Advocacy to get the schools to work with us to develop a plan to help Shane with his disabilities.

That plan did not include restraints or seclusion.

By the end of the third grade Shane was doing better in school and was able to finish the school year – something he was unable to do the previous years.

He entered a new school the following year, and the restraining and seclusion started over again.

By mid-year, Shane was no longer going to school. He finished the school year at home.

He was homeschooled the following year and enrolled in a different school for sixth grade where, for the first time, restraints and seclusion were not used on Shane.

He flourished that year and was able to complete the whole year for the first time since he started school.

Shane is an honor roll student in seventh grade and recently tested among the top eight students out of 1,200 in a “You Be the Chemist” competition.

Even though Shane still has issues that he is learning to deal with, his current teachers have learned other methods to deal with him without the use of seclusion or restraining.

I believe that the use of restraints or seclusion in school should not be allowed as a way to make children comply.

Schools should concentrate on awareness training for teachers to recognize and deal with behavioral issues like my grandson’s.

Information should be readily available to parents outlining their rights along with resources that can be used to assist them when working with the school systems. Y

a way to make Shane comply. According to the report, Shane

was restrained a total of 27 times while he was in kindergarten and first grade.

During this same period he was homebound and out of school 30% of the time.

For example, when he was 5 he had suffered a broken leg while on the trampoline and was in a full leg cast.

One day, during school, he was outside at the playground pulling grass in the lawn. He did not want to go back to class when the other students did.

The staff deemed him a flight risk, restrained him and carried him back into the school.

How much of a “flight risk” can a 5-year-old with a broken leg truly be?!

We continued having meetings with the school and got his therapist

involved. She told school officials that

restraint was not necessary and would only make matters worse.

She couldn’t stress enough that this was a poor way to handle a child with a disability, only making the child more confused and scared.

The struggle continued through kindergarten, first and second grade.

Shane was homebound several times while we would try to work through the constant restraining only to have the same things happen when he would return.

It wasn’t until the end of second grade that I had heard of the state Protection & Advocacy division.

After contacting P&A, I learned our rights and the processes available to us.

P&A even sent a representative to the meetings to act as an advocate for Shane.

Kentucky’s first regulation regarding the use of the restraint and seclusion of children in public schools took effect on Feb. 1 of this year.

The Kentucky Board of Education regulation was prompted by national advocacy and governmental agency reports documenting hundreds of injuries – and even deaths – because of the abuse and misuse of restraint and seclusion in public schools. These reports also revealed that children with disabilities

are disproportionately restrained and secluded in school.Although Kentucky has no known deaths due to

restraint or seclusion, the Kentucky Protection & Advocacy division of the Department of Advocacy has received more than 100 allegations of the abuse and misuse of restraint and seclusion in 63 Kentucky counties. P&A has investigated more than 80 cases of injuries

allegedly caused by restraints and has documented injuries ranging from cuts and bruises to miscarriage and petechial hemorrhaging – a precursor of asphyxia.

The Kentucky Department of Education drafted the regulation with input from parents, teachers,

behaviorists and psychologists, school administrators, school safety experts, law enforcement and child advocates. The regulation limits the circumstances in which

restraint and seclusion may be used.In the regulation, the use of mechanical, chemical, and

prone and supine restraints, and those restraints that restrict breathing are prohibited. The regulation requires schools to notify parents

every time a student is restrained. It also provides for documentation, debriefing and increased staff training.Importantly, the regulation does not prohibit teachers

from enforcing classroom discipline, breaking up fights or ensuring school safety.

– by Lucy HeskinsAttorney, Kentucky Protection & Advocacy

New Regulation Limits Use of Restraint on School Children



Triumph & Technology

Twenty-nine years ago my second child was born, the morning of his due date, 10 fingers 10 toes. But shortly after his first birthday he fell into a bucket of rainwater and nearly drowned.

But he was revived by a stream of the most loving, caring people, including family, friends, neighbors, doctors, nurses, therapists and a cast of thousands.

All were encouraged by every ounce of improvement Forrest made as he learned everything over again from breathing to eating to moving his body.

Forrest was unable to move functionally but he had lots of non-functional movement – Spasticity, Distonia, Asymmetrical Tonic Neck (ATNR) Reflex and Tongue Thrusting.

Still, he loved being moved, held, rocked and interacted with.

Forrest was unable to functionally use his vision at first from Strabismus, Cortical Vision Impairment… but he still had his beautiful eyelashes and smiling blue eyes that beckoned to stay an extra moment.

He was unable to speak… but had a tremendous desire to communicate.

Along the road we met an Occupational Therapist working with an engineer who had just set up an early Apple computer with added equipment (a large switch) that my son could activate with the slightest movement of his hand.

A bear danced on the screen for a few seconds, then my son activated it again with total delight and laughing.

We had seen a man with cerebral palsy use a computerized device with a speech synthesizer to speak for him.

We had a target and now a starting point.

We began investigating how to get this equipment for Forrest and discovered the University of Kentucky Special Education Department, which had a grant to teach special education teachers how to use computers with students with disabilities.

What a gift! I couldn’t believe there was this magic only three blocks from my house.

I began with the introduction to the computer course and followed with a course on Adapted and Assistive Devices.

The professors and students were great and got to know me and Forrest. With their assistance and a great speech therapist, we found equipment that would meet Forrest’s needs.

And our health insurance company agreed to provide this equipment.

By Jean Isaacs

Accepting a disability doesn’t mean accepting defeat. It means finding new ways of doing things.

While Helping Her Son Connect With the

World, Jean Isaacs of Lexington FoundedBluegrass Technology Center to Help Others

Do the Same


First a Salvation, Then a CallingDebbie Sharon Finds a Home at BTC

By Debbie Sharon

Like most parents, I didn’t get the handbook on how to raise my

child. I learned I would need to rely on the “village” to help me. One of the parents I met early on had a significant impact on not only me but thousands of others

My daughter, April, was born healthy and alert. However, at two months of age, she had a stroke, leaving us with many challenges: sensory, physical and cognitive.

During preschool, a speech language pathologist encouraged me to obtain a computer to help her learn. I had very little knowledge of such things and started asking questions throughout my circle of supports.

Everyone kept saying, “Oh, you need to talk to Jean!”

Who was this “Jean” person?I learned that our children attended

the same preschool program at the Child Development Center of the Bluegrass. We met and she shared

how a computer with special software and hardware could benefit my child.

Honestly, I bugged her to death looking for more information about the items needed, how to find someone to help me pay for them and then how to use them to make things

happen for my child. I called her so much that she told

me I would have to come to work at Bluegrass Technology Center for People with disAbilities.

The Center started in the dining room of Jean Isaac’s Lexington home.

BTC quickly transitioned to the corner of the Board room of the ARC of the Bluegrass and then to having its own office in a building next door when BTC was selected by the Governor to become the Eastern Regional Assistive Technology Center for the new federal Technology Assistance Act.

Currently, BTC is at 409 Southland

Drive in Lexington.

Children grow and change, medically as well as cognitively and physically. My daughter

developed a significant seizure disorder and this year we celebrated her 20th anniversary of major brain surgery where the majority of her right hemisphere was removed.

Today, she uses technology daily to participate in everyday activities. She uses her iPhone to remember doctor’s appointments, to take pictures, use the Internet, communicate through social media and to log directions and her activities.

And 25 years later, I’m still here at BTC, helping other families and professionals learn about today’s technologies and how they can help individuals with disAbilities to live, learn, work and play.

April and I want the world to see firsthand how technology enables us to dream our dreams and to reach for the stars.

It truly takes a “village” to raise the child, and we are not grown yet. We hope you come join us. Y

The Bluegrass Technology Center is a consumer driven, non-profit organization assisting individuals with disAbilities, their families and service providers obtain technologies that provide the gateway to greater independence, productivity, and quality of life.

BTC serves as the Central Regional Center for the Kentucky Assistive Technology Service (KATS) Network and is

At BTC, participants can:w Borrow devices to try w Find used devices for free or low-cost w Sell used devices w Give away devices w Place want ads for needed devices.The lending library at

BTC includes Adapted Toys, Adapted Switches, Adapted Digital Books, Aids for Daily Living, Computer Adaptations, Environmental Controls, Hearing/Vision

a participating member of United Way of the Bluegrass, WHAS Crusade for Children, Honorable Order of Kentucky Colonels, Lexington-Fayette Urban County Government and National Cristina Foundation.

BTC has a long history of providing quality services to thousands of individuals with disAbilities, their families and professionals throughout Kentucky and Southern Indiana.

Devices, Mobility, Seating & Positioning, Speech Generating Devices/Augmentive Alternative Communication.

BTC has introduced a new tool to help people explore the Center’s inventory of Assistive Technology devices, called the Kentucky AT Locator. This is a free service of the KATS Network that connects Kentuckians to the AT devices they need to live independently.

The online database can be found at: https://katsnet.at4all.com Y

What’s @ BTC...


Computers and augmentative communication devices have greatly enhanced Forrest’s life.

Through the years he has had wonderful opportunities using technology to communicate, from sharing his basic wants and needs to interacting with friends and family to telling jokes and playing games.

As we learned this new technology we met other individuals and families in our community who wanted to know more about these new technologies

When Forrest was about 4, I read an article in the national magazine “Exceptional Parent” about a Computer Resource Center in Berkeley, California headed by Jackie Brand.

The parent of a daughter with cerebral palsy and low vision, Jackie was working with computer manufacturers and vendors of computer hardware and software to help establish community resource centers for people with disabilities so they could access exciting advances in computer technology.

I will always remember Jackie’s advice: “Accepting a disability doesn’t mean accepting defeat. It just means finding new ways of doing things.”

We began to talk with folks in our community about the idea of a resource center.

People were invited. Meetings were held.

Then, in the fall of 1988 with resources from UK Special Education, Human Development Institute, Bluegrass ARC, professionals, individuals with disabilities, parents and friends, we started the Bluegrass Technology Center.

Since then we have seen thousands of Kentuckians with disabilities throughout the commonwealth access wide varieties of adapted and assistive devices that have improved the way they learn, communicate, work, recreate and live.

All of us working together have changed what it means to have a disability. Thanks to technology!

People who are blind can read books, people who cannot speak can carry on a conversation, and those with difficulty learning can unlock the potential within.

Growing up in Eastern Kentucky my family taught me that you helped your neighbor, and that you always shared what you grew in your garden.

We greatly appreciated sharing our experiences over the years and encourage people with disabilities, their families, friends and therapists to get involved with agencies like Bluegrass Technology Center or other community resources.

Volunteer. Donate. Be part of the solution.

Jean Isaacs and her husband Bruce Bramlette live in Lexington with Forrest, now 29. Jean, who worked at Bluegrass Technology Center for 20 years, and Bruce are full-time advocates for Forrest who has quadriplegia and is non-verbal.

Forrest loves comedy clubs, baseball, basketball and swimming. Y

forrest isaacs

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Physical Rehabilitation at Its Best!

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(859) 367-7121 cardinalhill.org

Our Outpatient Program treats children and teens with a wide variety of medical and congenital problems and

developmental issues.

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Continuum of Care at Cardinal Hill

Who better to explain the many services offered at Cardinal Hill Rehabilitation

Hospital than Pam Heissenbuttel, who has worked for the Lexington-based hospital for 23 years?

Heissenbuttel was hired as a physical therapist and is now the Program Manager of the Homecare, Outpatient Therapy Services and Cardinal Hill Medical Equipment programs.

The linchpin of Cardinal Hill’s success, Heissenbuttel said, is a dedicated, trained staff of doctors, nurses, therapists and volunteers.

“When parents see their child gain independence and get back to school or the soccer team, they are so happy,” she said. “The dedicated people who work here love the opportunity to work in this setting. They love this work.”

The staff works together to provide a continuum of care for a wide-range

of patients suffering from brain and spinal cord injuries to autism and swallowing disorders.

Services include:t Inpatient Acute Program:

Treats spinal cord and brain injuries, strokes, burns, amputations, major multiple traumas, neurological conditions, pulmonary diagnoses and orthopedic conditions.t Skilled Rehab Program: Treats

orthopedic conditions, joint replacements, mild strokes and other issues.t Homecare Services: Cardinal

Hill staff provides therapy, stabilizes medicines and teaches adaptations once patients return home.t Out-patient Services: Treats

wide range of ailments from pulmonary and orthopedic issues, neurological conditions, specifically Parkinson’s and Multiple Sclerosis.t Outpatient Clinic: Patients are

examined by physicians.t Well-

ness Program: With three therapeutic pools and a workout gym tailored for those with disabilities, program helps patients maintain wellness.t Support Groups: Weekly and

monthly meetings are available for individuals and families living with spinal cord and brain injuries, Pulmonary Conditions, Amputations, ALS and Parkinson’s. t Pediatric Programs: Noted for

its work with children, Cardinal Hill offers therapy for everything from ADD and ADHD to traumatic injuries and voice disorders. Y

Staff Works Together in Best Interests of Patient Care

Pam Heissenbuttel


Hello, my name is Cyndi Burns and I am a freelance writer in Louisville. What I am describing is what I experienced with my son Alex, who has Down syndrome.

Alex was diagnosed at birth in 1995 and started off as a typical kid with Down syndrome. He had low muscle tone and was adorable, happy and smiling.

A therapist came to our home and worked with him almost daily.

But at age 2½, Alex started to change, exhibiting symptoms of autism. Doctors were not convinced.

Alex was slapping his face, screaming for no apparent reason, rocking, “stimming,” looking at toys out of the corner of his eye and smearing feces on his body. He was moody and unhappy.

When Alex was 8 he threw his hard sipper/drink cup and hit an unsuspecting elderly woman in the head at the mall.

I was upset for the woman and knew I needed to get Alex’s behaviors under control.

Alex was prescribed Risperidone, and it worked like a miracle drug. He stopped hitting himself, he seemed focused, and now I could work on teaching Alex.

My son showed me he could learn and made progress.

In 2004, when Alex was 9, a center for treatment of autism and related disorders opened in

Louisville and Alex received his first confirmed diagnosis of autism.

He had missed important early intervention because he already had a label of Down syndrome, but he made even more progress after he received speech therapy and behavioral support from the center.

In 2006, Risperidone stopped working and Alex became more self- injurious. After a serious bout with

what would you do if you had a child labeled with a disability but felt like something more was going on?

What would you do if you felt that your child was slipping away and the doctors were not listening?

Now, what would you do if you exhausted all resources and still could not find the right help?

Would you start looking for help nationally if you could not get the right help from the local professionals?

... After an appearance on Dr.

Phil, Cyndi Burns

of Louisville finally found the

right treatment

for her son with

Down syndrome

and autism.

By Cyndi Burns

A Long and Winding Road... A Long and Winding Road...

Parents,


staph cellulitis in 2007 when his head swelled, his self-injurious behavior worsened.

At my wit’s end, I wrote to TV personality Dr. Phil in January 2008. Amazingly, we were selected for a show titled “Tired of Being a Mom.”

I was ecstatic. I thought my son would finally get the help he deserved. I also welcomed the chance to let other parents know that Down syndrome and autism can co-exist.

In February 2008, our family flew to the Dr. Phil show, and our show aired a month later.

Even though some viewers criticized my parenting skills, much good came from the TV appearance.

The show connected us with Dr. Doreen Granpeesheh of the Center for Autism and Related Disorders in California.

After reviewing Alex’s medical history, she concluded that for years he had been

overprescribed antibiotics, which had ravaged his digestive system.

We asked Dr. Granpeesheh if she could connect us with a Defeat Autism Now doctor.

The DAN project, created by the Autism Research Institute, promotes an approach to treatment that is based on the biomedical theory of autism.

That’s how we connected with Dr. Elizabeth Mumper of Advocates for Children in Virginia.

In March 2008 we took our son to meet Dr. Mumper, who started us on the road to helping our son.

We placed Alex on a gluten free/casein free diet, and gave him supplements and hyperbaric treatments.

A week after starting the diet my son no longer came home from school screaming and crying. Alex had gut dysbiosis and an overgrowth of yeast that was causing stomach pain.

In addition to visiting Dr. Mumper, we also took Alex to the Kennedy

Krieger Institute in Baltimore.This was a parents’ dream come

true. Finally we were in touch with people who knew how to help those with Down syndrome and autism.

In August of 2008 my son and I went to live for four weeks to get help from Dr. Mumper.

The night we arrived at our accommodations the door slammed behind me, locking my son inside and me outside.

It was nighttime and I was scared. Alex was unable to follow simple instructions, and I had never showed him how to unlock a door because I feared he would get outside and wander off.

It took three desperate requests from me, but finally, Alex stopped rocking, got up from the couch and opened the door.

I hugged him while crying and praised him with high fives for his accomplishments.

The moment Alex let me in I knew we were on the right track with the biomedical intervention that Dr. Mumper recommended.

Parents, listen to your gut. If you notice your child with Down syndrome is not progressing

as others, then insist that your child be examined at an autism center by a psychologist or speech therapist who can perform ADOS testing.

If an autism center is not available then have the child examined by a psychiatrist or developmental pediatrician who can recognize autism in patients with Down syndrome.

If you are not getting the answers you are seeking, you may try contacting Dr. George Capone’s office at the Down syndrome clinic at the Kennedy Krieger Institute in Baltimore Maryland.

Dr. Capone has done extensive research on children with Down syndrome having Autism.

According to Dr. Capone estimating the occurrence of autism in adults with Down syndrome is difficult. Currently it’s estimated between 1-10% but Dr. Capone believes 5-7% is more accurate.

Resourcest Dr. George Capone, director

of the Down Syndrome Clinic and Research Center at Kennedy Krieger Institute

www.kennedykrieger.org/patient-care/faculty-staff/george-capone t Dr. Elizabeth Mumper, top

adviser on autism treatment for Defeat Autism Now!

www.rimlandcenter.comt Doreen Granpeesheh, founder

and CEO of ACT TODAY, which is a non-profit organization whose mission is to provide funding and support to families that cannot afford treatment for their children with autism.

http://act-today.orgt “When Down Syndrome and

Autism Intersect,” Edited by Margaret Froehlke, R.N. & Robin Zaborek / www.woodbinehouse.com/Autism.10.0.0.2.htm Y

Cyndi Burns of Louisville with her children, Andrea & Alex


Economic IntelligenceTo Fight Poverty Among Disabled, Ky. Voc Rehab

Helps Devise Asset Development Program

In the past year, the Kentucky Office of Vocational Rehabilitation (KYOVR) has become involved in several

initiatives to bring asset development tools to individuals with disabilities.

Asset development has been viewed increasingly as an anti-poverty strategy, promoting the belief that families who can develop financial assets will be more stable and better able to plan for the future.

Asset development tools can include opening bank accounts, financial literacy training, credit rebuilding, individual development (matched savings) accounts, free tax assistance and the Earned Income Tax Credit.

People with disabilities have a higher poverty rate than the population at large and could greatly benefit from asset development tools.

Often, the main barrier for individuals with disabilities in this arena is a simple lack of awareness about what is available.

By providing staff support to the Kentucky Assistive Technology Loan Corporation and working with its own consumers, KYOVR has become acutely aware of the financial issues, credit problems and lack of financial well-being experienced by many individuals with disabilities.

KYOVR’s main mission is to assist Kentuckians with disabilities in obtaining employment.

Unfortunately, getting a job does not necessarily translate into financial independence and stability.

An individual needs a foundation of financial knowledge to succeed and thrive independently.

Without that knowledge, the result

can be poor financial choices, crushing debt and persistent poverty.

KYOVR has reached the realization it may need to prepare an individual for more than work alone.

As a first step, KYOVR worked with several partners to organize an Asset Development

Summit. Called “Key to the Future,” the summit took place in Louisville in October 2012.

Co-sponsors of the summit were the KYOVR, the Commonwealth Council on Developmental Disabilities (CCDD), the Kentucky Asset Building Initiative, Fifth Third Bank, KATLC, the Center for Accessible Living and the Southeast Technical Assistance and Continuing Education Center (TACE).

The summit brought together more than 60 members of the asset building and disability communities to discuss how the two communities could work together to build economic self-sufficiency for those with disabilities.

The summit then generated ideas on how to increase collaboration between the two groups and increase asset building opportunities for people with disabilities.

After the Summit, KYOVR trained its field managers and a number of vocational rehabilitation counselors on asset development.

This was the first effort to build capacity within the agency for incorporating asset development and financial plans into the vocational rehabilitation counseling being provided to consumers.

KYOVR is planning on several steps in the immediate future to build upon

By Dave Matheis

the success of last fall’s summit. As KYOVR continues to work with various partners, including the CCDD, on asset development activities, it remains committed to helping persons with disabilities maximize the benefits of employment. Y

Dave Matheis is the Program Planning and Development Branch Manager and Independent Living Liaison with the Kentucky Office of Vocational Rehabilitation.

1 KYOVR is participating in a transition pilot with the TACE, which will assist the agency in working with selected vocational rehabilitation counselors and three school districts to help 40 students develop financial plans to implement after leaving school as a first step toward financial stability.

2 KYOVR is developing a website to provide persons with disabilities resources on asset development.

3 KYOVR is working to develop an Individual Development Account program to help persons with disabilities save money for automobile purchases.

4 KYOVR plans to hold smaller versions of the Louisville Asset Development Summit around the state over the next year.

5 KYOVR is working with TACE again to develop a webinar on asset development for case managers, social workers and KYOVR vocational rehabilitation counselors.


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Commonwealth Council on Developmental Disabilities100 Fair Oaks Lane, 4E-FFrankfort, Ky., 40601(877) 367-5332, (502) 564-7841http://chfs.ky.gov/ccdd/ CCDD’s mission is to create change through visionary leadership and advocacy so that people have choice and control over their lives.

Attorney Robert McClellandMcClelland & Associates, PLLC1795 Alysheba Way, Unit 2102Lexington, Ky., 40509 / (859) 543-0061www.Lexingtonelderlaw.com Robert L. McClelland is an elder law attorney and guardian in the Lexington firm of McClelland & Associates, PLLC. He is a member of the Special Needs Alliance, a national alliance of special needs attorneys who focus their practice in benefits planning and caring for those with special needs family members.

Attorney Karen L. Perch2333 Alexandria Drive

P.O. Box 790 Ashland, Ky., 41105(606) 329-8588 / (800) 562-8909www.pathways-ky.org

ARC of Kentucky706 East Main Street, Suite AFrankfort, Ky., 40601(502) 875-5225/ (800) 281-1272http://arcofky.org/ The ARC of Kentucky believes that individuals with intellectual and developmental disabilities are contributing members of schools, work places, churches, synagogues, neighborhoods and their communities. The ARC values services and supports that enhance the quality of life through interdependence, friendship, choice, and respect for individuals with intellectual and developmental disabilities. The ARC’s website includes a list of all the Comprehensive Care Centers in Kentucky. ARC of Barren County255 Marion Dr., Glasgow, Ky., 42142(270) 579-5000ARC of Breckinridge CountyP.O. Box 36, Harned, Ky., 40144(800) 755-0539A.R.H.H.C. of Hardin CountyP.O. Box 2013, Elizabethtown, Ky., 42702(270) 737-1140 or (270) 234-0149 for the Learn Program

Lexington, Ky., 40504(859) 224-0513www.perchlaw.com Karen Perch and her entire staff are dedicated to helping clients with their legal matters regarding Wills, Living Wills, Powers of Attorney, Trusts, including Special Needs Trusts, Qualifying Income Trusts (Miller Trusts) and Family Trusts and Estate Administration

ALMOSTfamily/CAREtendersKentucky Home Health OfficesMultiple locationswww.patientcare.com/locationdetail.php?u=Kentucky

Assisting Hands Home Care1795 Alysheba Way, Lexington, Ky., 40509(859) 264-0646www.assistinghands.com/lexington

Big Brothers Big Sisters of Kentuckiana1519 Gardiner Lane, Suite BLouisville, Ky., 40218(877) 588-2300, (502) 587-0494www.BigsWanted.com The mission of BBBS is to help all children reach their full potential through professionally supported one-to-one mentoring relationships.

Pathways

exceptional

Resource List 2013family ky

general


ARC of Central Kentucky3320 Tates Creek Rd., Lexington, Ky., 40502(859) 271-4246P.L.A.N.S. – ARC of Christian CountyP.O. Box 1257 Hopkinsville, Ky. 42241(270)886-5481 or (270) 885-7959ARC of Lake Cumberland131 N. Maple St., Somerset, Ky., 42501(606) 706-3402ARC of Logan County443 Hopkinsville Rd, Russellville, Ky., 42276(270) 726-2218The ARC of Madison CountyP.O. Box 1863 Richmond, Ky., 40476(859) 625-1666The ARC of Mead CountyP.O. Box 611Brandenburg, Ky., 40108(270) 422-5335The Point/ARC of Northern Kentucky104 West Pike Street, Covington, Ky., 41011 (859) 491-9191 / Fax: (859) 491-9195 www.thepointarc.org The Point provides educational, residential, social and vocational opportunities for persons with intellectual/developmental disabilities.The ARC of Owensboro731 Jackson St, Owensboro, Ky., 42302(270) 685-2976The ARC of Warren County380 Petty Rd, Bowling Green, Ky., 42101 (270) 783-9394Louisville Metro ARC3713 Fallen Timber Dr., Louisville, Ky., 40241(502) 339-8690

Best Buddies Kentucky1151 South Fourth Street, Louisville, Ky., 40203(502) 736-0838 www.bestbuddieskentucky.org Best Buddies Kentucky, founded in 2009, is dedicated to establishing a global volunteer movement that creates opportunities for people with intellectual and developmental disabilities such as Down syndrome, autism and traumatic brain injuries.

Bluegrass Technology Center409 Southland Drive, Lexington, Ky., 40503(859) 294-4343; (800) 209-7767www.bluegrass-tech.org BTC is a non-profit, grassroots organization that assists individuals who have disabilities, their families and service providers in connecting with various technologies and services that provide the gateway to greater independence, productivity and quality of life. BTC is a member of the Alliance for Technology Access, The Eastern Regional Center for

the Kentucky Assistive Technology Service (KATS) Network.

Center for Accessible LivingLouisville Location305 W. Broadway, Suite 200Louisville, Ky., 40202; Voice: (502) 589-6620; TTY: (502) 589-6690 / Toll Free: (888) 813-8497 [email protected] Location1051 N. 16th Street, Suite CMurray, Ky., 42071; Voice: (270) 753-7676TDD: (270) 767-0549;Toll Free: (888) [email protected] The Center for Accessible Living is an innovative leader in empowering all people to achieve their goal of independent living while involving the entire community.

Center for Independent Living 624 Eastwood Avenue, Bowling Green, Ky., 42103 TTY: (800) 648-6057(270) 796-5992; TTY: Use Relay ServiceE-mail: [email protected]

Children’s Home of Cincinnati5050 Madison Road; Cincinnati, Ohio 45227 (513) 272-2800Roselawn Offices / 5051 Duck Creek RoadCincinnati, Ohio 45237 http://thechildrenshomecinti.org/ The Children’s Home of Cincinnati is a private, non-profit social service agency that improves the lives of children and their families through services in four areas: adoption, early childhood, education and mental health. The Home serves children of all ages and their families, including adoptive children, new parents needing support and guidance, children with special education needs, and children with mental health diagnoses.

Christian Appalachian ProjectLexington Location2610 Palumbo Drive, Lexington, Ky., 40509(859) 269-0635 / (866) 270-4227www.christianapp.org CAP is a Kentucky-based, non-profit Christian organization committed to serving people in need in Appalachia by providing physical, spiritual and emotional support through a wide variety of programs and services.

Court Appointed Special Advocates for ChildrenASA of Kenton County303 Court Street, Suite 707

Covington, Ky., 41011 / (895) 392-1792www.casakentonky.org Court Appointed Special Advocates or CASA volunteers are everyday citizens appointed by judges to advocate for the safety and well-being of abused and neglected children. Last year in Kentucky, more than 700 CASA volunteers advocated for the best interest of more than 3,000 children in 42 counties.

Easter Seals Kentucky 2050 Versailles Road, Lexington, Ky., 40504(859) 254-5701 / www.cardinalhill.org

Easter Seals West Kentucky 801 N. 29th St. / Paducah, Ky., 42001(270) 444-9687www.eswky.easterseals.com

Handi Capable Guide ServicesPO Box 421, Grand Rivers, Ky., 42045(270) 559-6876

Home of the Innocents1100 E. Market St., Louisville, Ky., 40206 (502) 596-1090www.homeoftheinnocents.org Contact: [email protected]

Hospice of the Bluegrass 2312 Alexandria Drive, Lexington, Ky., 40504(859) 276-5344 (800) 876-6005www.hospicebg.org Hospice of the Bluegrass provides physical, emotional and spiritual care for adult and pediatric patients with life-limiting illness, and their families, at home, in nursing facilities and at Hospice Care Centers. Support and bereavement services extend to family members and anyone in the community experiencing grief. Hospice of the Bluegrass provides care in 32 central, northern and southeastern Kentucky counties.

Human Development InstituteUniversity of Kentucky126 Mineral Industries BuildingLexington, Ky., 40506 / (859) 257-1714 www.hdi.uky.edu/ // http://www.uky.edu/coldstream/Companies/uk-human-development-institute HDI’s mission is to promote the independence, productivity and inclusion of people with disabilities and their families throughout the life span. Established in 1969, HDI is a unit of the Office of the Executive Vice President for Research at the University of Kentucky and part of a nationwide network of University Centers for Excellence. The Centers were established by federal legislation to

resource guide


promote team-based approaches to provide services for individuals with disabilities and their families. HDI and its sister agencies, the Commonwealth Council on Developmental Disabilities and the Kentucky Division of Protection & Advocacy, form the state’s Developmental Disability Network.

The I Believe FoundationPO Box 1123 Ashland, Ky., 41105-1123(606) 831-8752/(606)922-0702Fax (606) 326-2249www.ibelievefoundation.org I Believe is dedicated to creating a fun, learning and therapeutic environment by adapting everyday activities and sports to include children with special needs and their families. The foundation was established by occupational therapists and provides a variety of life-enriching opportunities where the main goal is to challenge disabilities and create new abilities by fostering independence, help build friendships, build self-esteem and enhance the quality of life for children and their families.

Independence Place1093 S. Broadway Suite 1218Lexington, Ky., 40504(859) 266-2807, (877) 266-2807 TTY using Kentucky Relay (800) 648-6056www.independenceplaceky.org A non-profit, consumer driven, non-residential Center for Independent Living, serving people with disabilities of all ages. The mission is to assist people with disabilities to achieve their potential for community inclusion through improving access and equal opportunity.

National Dissemination Center for Children with Disabilitiesnichcy.org

Project SAFE: Kentucky Association of Sexual Assault Programs, Inc.P.O. Box 4028; Frankfort, Ky., 40604(502) 226-2704; [email protected] KASAP’s mission is to speak with a unified voice against sexual victimization. KASAP is funded in whole or in part with public funds.http://www.kasap.org/

Redwood 71 Orphanage RoadFt. Mitchell, Ky., 41017 / (859) 331-0880www.redwoodnky.org A non-profit organization funded by United Way, Redwood guides children and adults with multiple and severe disabilities to achieve independence and reach their highest potential throughout their lives,

by providing enriching educational, therapeutic and vocational services.

Recreation Involvement FundCommonwealth Council on Developmental Disabilities100 Fair Oaks Ln. 4E-F, Frankfort, Ky., 40601 (877) 367-5332Chfs.ky.gov/kcdd

ResCare9901 Linn Station RoadLouisville, Ky., 40223 / (502) 394-2100www.rescare.com Provides supports to people with developmental, cognitive and intellectual disabilities. Services include group homes, supported living, in-home, Telecare, foster or companion care and vocational and habilitation.

Ronald McDonald HouseCharities of the Bluegrass1300 Sports Center Dr., Lexington, Ky., 40502(859) 268-0757 / www.rmhclexington.com This charity exists to create and support programs that directly improve the health and well-being of children and to strengthen families by keeping them together in times of medical need.

Shriner’s Hospital for ChildrenSpina Bifida Program(Orthopedica clinic only, will refer for pediatric and adult care) 1900 Richmond Road, Lexington, Ky., 40502(859) 268-5742 / www.shriners.net

Social Security Disability Insurancewww.ssa.gov

Special Needs Adoption ProgramDCBS/Adoption Branch275 East Main Street, 3C-EFrankfort, Ky., 40621(800) 928-4303http://chfs.ky.gov/snap.htm

Special Olympics Kentucky105 Lakeview CourtFrankfort, Ky., 40601(502) 695-8222; (800) 633-7403www.soky.org Special Olympics is the world’s largest program of sports training and competition for children and adults with intellectual disabilities.

Thomas H. Pinkstaff Medical Home Clinic333 Waller Ave, Suite 300Lexington, Ky., 40503

(859) 252-3270 Primary care for children with special health care needs.http://ukhealthcare.uky.edu/Pinkstaff-Clinic/#.UV7Y_8qnc4w

United Way of the Bluegrass2480 Fortune Drive #250Lexington, Ky., 40509 / (859) 313-5465(859) 233-4460/ Fax (859) 259-3397 www.uwbg.org

United Way of KentuckyP.O. Box 4653Louisville, Ky., 40204(502) 583-2821/ Fax (502) 292-5673www.uwky.org

WHAS Crusade for Children520 West Chestnut StLouisville, Ky., 40203(502) 582-7706 www.whas-crusade.org The WHAS Crusade for Children, Inc., established in 1954, raises money for agencies, schools and hospitals to better the lives of children with special needs. An independent board of interdenominational ministers known as the Crusade Advisory Panel decides how donations are distributed each year

autismThe Kelly Autism Program Western Kentucky University Clinical Education Complex104 East 14th St.Bowling Green, Ky., [email protected](270) 745-4KAP (4527)

Wendell Foster Campus815 Triplett StOwensboro, Ky., 42303 [email protected] http://kap.wku.edu/web-forms/contact_us.html(270) 852-1438 or (270) 663-1460

Autism Society of the Bluegrass 453 Rockwood Parkway, Lexington, Ky., 40505 (859) 299-9000 / [email protected]

Autism Society of Greater Cincinnati P.O. Box 43027 Cincinnati, Ohio 45243-0027(513) 561-2300 www.autismcincy.org

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ASGC works to promote awareness and education about autism. ASGC provides information packets, support groups for families and individuals, newsletters and public speakers.

Autism Society of KentuckianaP.O. Box 21895Louisville, Ky., 40221-0895Rebecca Thompson, Kentucky Resident Contact(502) 263-5708; [email protected]

Autism Group at Eastern Ky. Univ.100 Ross Drive Richmond, Ky., 40475Rita Brockmeyer; (859) 623-6074 / [email protected]://katcproviders.louisville.edu/providers/detail/204

Families for the Effective Treatment of Autism1100 East Market Street; Louisville, Ky., 40206(502) 596-1258www.featoflouisville.org

Kentucky Autism Training CenterUniversity of Louisville Autism Centerat Kosair Charities1405 E. Burnett Avenue. Louisville, Ky., 40217(502) 852-4631 or800-334-8635 ext. 852-4631http://louisville.edu/education/kyautismtraining/

Lexington Adults With AspergersMeet Up GroupThe Church of St. Michael the Archangel2025 Bellefonte Drive, Lexington, Ky., [email protected]

Powell County Parents and Professionals Autism Support GroupPowell County Middle School770 West College Ave., Stanton, Ky., 40380Marilyn Barnett, President & Coordinator(606) 521-9676Meets second Monday - September-December, March & April. 4-5:30 p.m.

Turning Point for Autism, Inc.P.O. Box 7721; Louisville, Ky., 40257(502) 899-9128 www.turningpoint1.org A non-profit organization that providesABA therapy through the Center for Autism and Related Disorders (CA.) with therapists based in the Kentucky area.

Weisskopf Child Evaluation Center

571 South Floyd St., #100, Louisville, Ky., 40202(502) 852-5331 https://louisville.edu/medschool/pediatrics/clinical/wcecProvides center-based and outreach diagnostic evaluations and treatment to infants and children with, or at risk for, developmental disabilities, congenital anomalies, genetic disorders, autism, organic behavior disorders (ADHD) and learning disabilities, as well as genetic counseling to adults.

syndromedown

Down Syndrome Association of Central KentuckyP.O. Box 910516; Lexington, Ky., 40591-0516(859) 494-7809 / www.dsack.org DSACK exists to celebrate the Down syndrome community, support individuals with Down syndrome and their families, educate the Central Kentucky community and assist in local and national research efforts. DSACK celebrates that all people are beautiful, capable and loved. Serves Central and Eastern Kentucky.

Down Syndrome Association of Greater Cincinnati644 Linn Street Suite 1128 Cincinnati, Ohio 45203-1734

(513) 761-5400 / http://dsagc.com/ By providing families with support, inspiration and information, the Association helps individuals with Down syndrome achieve their maximum potential. Including individuals with Down syndrome in neighborhood schools, community activities and the business world benefits individuals and their respective communities.

Down Syndrome Association of South Central KentuckyPO Box 1611, Bowling Green, Ky., 42101email: [email protected]

Down Syndrome of Louisville, Inc.5001 South Hurstbourne ParkwayLouisville, Ky., 40218(502) 495 5088www.downsyndromeoflouisville.org

Down Syndrome InfoSource, Inc.P.O. Box 221316 Louisville, Ky., 40252-1316(502) 412-3759 / Email: [email protected]

Green River Area Down Syndrome AssociationP.O. Box 2031, Owensboro, Ky., 42302(270) 925-0195www.gradsa.org

resource guide


epilepsy

Epilepsy Council of Greater Cincinnati 895 Central Avenue, Suite 550Cincinnati, Ohio, 45202 (513) 721-2905; (877) 804-2241 [email protected]://www.cincinnatiepilepsy.org/

Epilepsy Foundation of KentuckianaKosair Charities Centre982 Eastern Parkway; Louisville, Ky., 40217(502) 637-4440; (866) 275-1078www.efky.org

education

Kentucky Adult EducationCouncil on Postsecondary Education1024 Capital Center Drive, Suite 250Frankfort, Ky., 40601 / www.kyae.ky.gov(502) 573-5114 V/TTY or (800) 928-7323 V/TTY

Coalition Reform in Special Education Services (C.R.I.S.E.S) 243 Shady Lane, Lexington, Ky., 40503 (859) 278-4991/ [email protected]

Conductive Learning Center of Greater Cincinnati325 W.19th Street; Covington, Ky., 41014 (859) 261-2333http://clcgc.org/ Conductive education is an intensive, multi-disciplinary approach to education, training and development for individuals with cerebral palsy, spina bifida and other motor challenges.

Creative Learning Center Woodland Early Learning Center575 Woodland Avenue; Lexington, Ky., 40508(859) 255-3444 www.cclc.com/center/ky/woodland-early-learning-center

Kentucky Education Agency Rural Representative 500 Mero Street, Capitol Plaza Tower, 6th FloorFrankfort, Ky., 40601; (502) 564-4474www.education.ky.gov

Kentucky Education Rights Center1323 Moores Mill Road; Midway, Ky., 40347 (859) 983-9222; [email protected]

Hearn Elementary School300 Copperleaf Blvd., Frankfort , Ky., 40601(502) 352-2425 / Stacy MooreJefferson County PRCP.O. Box 34020, Van Hoose Ed. Center 4th, Louisville, Ky., 40232(502) 485-3703 / www.jefferson.k12.ky.us/Jessamine County PRC2101 Wilmore Road, Nicholasville, Ky., 40356(859) 887-2421 ext 3728 / Vickie ShearerMagoffin County PRCP.O. Box 109, Gardner Trail, Salyersville, Ky., 41465 (606) 349-6117 / Debbie Swineywww.magoffin.kyschools.us/sped/separent.htmSimpson County PRCP.O. Box 467, Franklin, Ky., 42701(270) 586-2008 / Bill Porter Upper Cumberland Coop PRC116 North 4th Street, Williamsburg, Ky., 40769(606) 549-7001 ext 4411 / Deborah Lawson

VSA Arts of KentuckyP.O Box 3320 ; Bowling Green, Ky., 42101Delaire Rowe, Executive Director (270) 904-7019email: [email protected] Office21st Floor, Capital Plaza TowerFrankfort, Ky., 40601(502) 564-3775 or (502) 564-3472Email: [email protected]

schools

Child Development Centers of the Bluegrass290 Alumni Drive, Lexington, Ky., 40503(859) 218-2322www.cdcbg.orgFour-Star rated preschool for children with and without disabilities. Services provided include assessment, evaluations, and speech, physical and occupational therapy.

Academy for Individual Excellence3101 Bluebird Lane Louisville, Ky., 40299 / (502) 267-6187 www.aiexcellence.com

The Academy at St. Andrews2233 Woodbourne Avenue, Louisville, Ky., 40205(502) 473-7219www.theacademy-standrews.org A private school for children with developmental disabilities, such as autism, Asperger’s syndrome, pervasive developmental disorders and other communication and intellectual disabilities.

www.edrights.com

Kentucky State Department of EducationMelissa Terrell500 Mero St., 6th Floor CPTFrankfort, Ky., 40601(502) 564-2000 x4605www.education.ky.gov

The Kidz Club7140 Preston Highway, Louisville, Ky., 40219(502) 368-9318225 N. 25th Street, Louisville, Ky., 40212(502) 365-2426527 Watson Road, Erlanger, Ky., 41018(859) 727-07001721 Maywick View Lane, Lexington, Ky., 40504(859) 224-0799www.thekidzclub.com The Kidz Club is a prescribed pediatric extended care facility that provides skilled nursing care for children who are medically fragile in a day care setting. Kidz Club children range from having highly complex medical conditions to kids that simply need to be monitored or have medication delivered. The Kidz Club provides educational enrichment, therapy follow-through, field trips and activities in a fun and social setting. Transportation can be provided. Medicaid and private insurance accepted. There are no costs to the child or their family.

Music for Life: Music Therapy and Music EducationPatricia Guobis, M. M., MT-BC1815 Deerwood Avenue, Louisville, Ky., 40205(502) 456-2682; (502) 767-8308

Northern Kentucky University Office of Disability ServicesNorthern Kentucky UniversityNunn Drive / Highland Heights, Ky., 41099(859) 572-6373http://disability.nku.edu/ NKU provides learner-centered assistance and resources to students with disabilities in their transition to Northern Kentucky University.

Public School Parent Resource Centers Berea RTC/PRCP.O. Box 159 / 116 Jane Street, Berea, Ky., 40403(859) 986-1929 / (800) 343-2959Carol Brooks/Andrea SargentFayette County PRC701 E. Main Street, #302, Lexington, Ky., 40502(859) 381-4229 / Anita Joneswww.fcps.net/prcFranklin County PRC

resource guide


The dePaul School 1925 Duker Avenue; Louisville, Ky., 40205 (502) 459-6131 www.depaulschool.org

KORE AcademyPorter Memorial Church4300 Nicholasville Road, Lexington. Ky. (859) 971-7129 School for children with learning differences: Grades 3-12.

The Langsford Center9402 Towne Square Ave, Cincinnati, Ohio 45242(513) 531-74002520 Bardstown Road, Louisville, Ky., 40205(502) 473-7000211 Townepark Circle, Middletown, Ky., 40243www.langsfordcenter.com

The Learning Connection“Where the Right Brain is Visited”Catherine Nagle Senn, Director2233 Alta Ave.; Louisville, Ky., 40205-1105(502) 451-8011Email: [email protected]

The Lexington School’s The Learning Center1050 Lane Allen Road; Lexington, Ky., 40504 / (859) 278-0501www.thelexingtonschool.org The Learning Center provides a unique and essential service to children with language-based differences by offering an alternative to traditional classrooms. By creating a teaching environment that eliminates the major obstacles to learning, students are able to close the gap between achievement and their potential. Teacher-student ratios of 1:4 allow for individualized instruction in the core areas of greatest need. In addition, low student teacher ratios will be maintained in other subjects such as science, social studies, computer skills, specials and social skills.

Meredith Dunn School3023 Melbourne Avenue

resource guide

Academy ofSpecial Needs PlannersAcademy of

Special Needs Planners

Karen L. Perch, Attorney

2333 Alexandria Dr. Lexington, KY

• Wills• Trusts to hold assets belonging to the person with special needs.• Trusts to hold assets for the benefit of the person with special needs.• Trusts for other purposes• Powers of Attorney• Living Wills• Guardianship Information

karenlperch.specialneedsplanners.com

(859) 224-0513

Helping families and individuals plan for their loved ones with special needs. Attorney Perch can help you develop a

comprehensive plan that might include:

Call For Your Free Initial Consultation!

Member Since 2007

Louisville, Ky., 40220(502) 456-5819 www.meredithdunnschool.org

Pitt Academy6010 Preston Hwy; Louisville, Ky., 40219(502) 966-6979; http://pitt.com/

Sharon School200 Oak Tree Lane, Nicholasville, Ky., 40356 / (859) [email protected] Homeschool for students with attention deficit disorders and learning disabilities.

The Sphinx Academy1591 Winchester Road #101 Lexington, Ky., 40505(859) 309-6372www.sphinxacdemy.com New and innovative secondary school for grades 7-12. Combines Montessori, homeschooling and special education. Sproutlings Pediatric Day Care and PreschoolKosair Charities Center 3701 Frankfort Avenue, Louisville, Ky., 40041 / (502) 753-8222www.SproutlingsDayCare.com Sproutlings is a dual-licensed program and has spaces for medically fragile children and children in traditional day care or preschool. Staffed by Registered Nurses, Certified Nursing Assistants, Teachers and Teacher Aides and caring for a wide variety of medical conditions. Medicaid and private insurance is accepted.

Stewart Home School4200 Lawrenceburg Road, Frankfort, Ky., 40601(502) 227-4821www.stewarthome.com Discover a residential school that offers lifelong learning, a postsecondary experience, the opportunity to attain a GED, vocational training and countless social and recreational activities among friends from all around the world.


Summit Academy of Louisville11508 Main Street; Louisville, Ky., 40043 / (502) [email protected]

resourceskentucky

The Kentucky Administrative RegulationsListed by title or seachable by keywordwww.lrc.state.ky.us/KAR/frntpage.htm

Kentucky Cabinet for Health and Family ServicesCommission for Children with Special Health Care NeedsCentral office/ Louisville 310 Whittington Parkway, Suite 200Louisville, Ky., 40222(502) 429-4430/ Toll Free: (800) 232-1160Fax: (502) 429-4489Serving Bullitt, Carroll, Gallatin, Henry, Jefferson, Oldham, Owen, Shelby, Spencer, Trimble counties and statewide.Ashland5850 US 60, Summit Plaza Ashland, Ky., 41102 / (606) 929-9155(800) 650-1329 Serving Boyd, Carter, Elliott, Floyd, Greenup, Lawrence and Magoffin counties.Barbourville110 Johnson Lane, PO Box 1330Barbourville, Ky., 40906-5330(606) 546-5109 / (800) 348-4279 Serving Bell, Clay, Harlan, Jackson, Laurel, Rockcastle, Knox and Whitley counties.Bowling Green240 Louisville RoadBowling Green, Ky., 42101(270) 746-7816; (800) 843-5877 Serving Allen, Barren, Butler, Edmonson, Hart, Logan, Metcalfe, Monroe, Simpson and Warren counties.Elizabethtown580 B Westport Road, Elizabethtown, Ky., 42701(270) 766-5370 / (800) 995-6982Fax: (270) 769-5121 Serving Breckinridge, Grayson, Hardin, Larue, Marion, Meade, Nelson and Washington counties.HazardHazard103 Town and Country Lane, Suite MHazard, Ky., 41701(606) 435-6167/ (800) 378-3357Fax (606) 435-6164

Family to Family Health Information CentersWestern Region Sondra Gilbert / [email protected] (270) 852-2918 / (877) 687-7038, ext. 2123Eastern Region (Including Louisville)Debbie Gilbert / [email protected](502) 429-4430, ext. 279(800) 232-1160, ext. 279www.kyf2f.com Located at the offices of the Commission for Children With Special Health Care Needs, Family to Family HICs are family-run centers that assist families of children and youth with special health care needs and the professionals who serve them. The goal is to help keep children healthy by promoting regular medical care. F2F HICs help families make more informed choices by providing support, information,resources and training. F2F HICs promote access to community based, self-directed services that are available to children with special needs.

KATS (Ky. Assistive Technology Service Network Coordinating Center) 200 Juneau Drive, Suite 200 Louisville, Ky., 40243(502) 489-8285 / Toll Free (800) 327-5287Fax (502) 245-4804www.katsnet.org The KATS Network is the Kentucky Assistive Technology program operating within its lead agency, the Office for the Blind, Education Cabinet. It consists of a statewide network of organizations and individuals connecting to enhance the availability of assistive technology devices and services to improve the productivity and quality of life for individuals with disabilities. In addition to the Coordinating Center located in the McDowell Center in Louisville, there are four regional AT resource centers and two partner satellite centers that are participating members of the KATS Network serving Kentucky.

Kentucky Assistive Technology Loan Corporation (KATLC)275 East Main Street, Mail stop 2 E-KFrankfort, Ky., 40621Toll free: (877) 675-0195Katlc.ky.gov

Children’s Law CenterCovington Office:1002 Russell Street Covington, Ky. (859) 431-3313Lexington Office: Georgetown Road, Lexington, Ky., 40511 / (859) 431-3313Email: [email protected] Provides free legal services for children with educational disabilities, and performs research and

Serving Breathitt, Knott, Lee, Leslie, Letcher, Owsley, Perry and Wolfe counties.Lexington 333 Waller Ave., Suite 300, Lexington, Ky., 40504(859) 252-3170 / (800) 817-3874Fax: (859) 225-7155 Serving Anderson, Bourbon, Boone, Boyle, Clark, Estill, Fayette, Franklin, Garrard, Grant, Harrison, Jessamine, Kenton, Lincoln, Madison, Mercer, Nicholas, Powell, Scott, and Woodford counties.Morehead 214 W. First St.; Morehead, Ky., 40351(606) 783-8610 / (800) 928-3049Fax (606) 783-8612 Serving Bath, Bracken, Campbell, Fleming, Lewis, Mason, Menifee, Morgan, Montgomery, Pendleton, Robertson, and Rowan counties.Owensboro1600 Breckenridge St.; Owensboro, Ky., 42303(270) 687-7038 / (877) 687-7038Fax: (270) 687-7040 Serving Daviess, Hancock, Henderson, Hopkins, McLean, Muhlenber, Ohio, Union and Webster counties.Paducah 400 Park Ave., Bldg. D; Paducah, Ky., 42001(270) 443-3651 / (800) 443-3651/ Fax (270) 441-7119 Serving Ballard, Caldwell, Calloway, Carlisle, Crittenden, Fulton, Graves, Hickman, Livingston, Lyon, Marshall, McCracken, and Trigg counties.Prestonsburg5000 KY Route 321; Prestonsburg, Ky., 41653(606) 889-1761/ (800) 594-7058Fax: (606) 889-1766 Serving Floyd, Johnson, Magoffin, Martin and Pike counties.SomersetProfessional Plaza401 Bogle St., Suite 104; Somerset, Ky., 42503 (606) 677-4120 / (800) 525-4279 Serving Adair, Casey, Clinton, Cumberland, Green, McCreary, Pulaski, Russell, Taylor and Wayne counties. The Commission for Children with SpecialHealth Care Needs has received a grant from the federal Health Resources and ServicesAdministration to create Family to FamilyHealth Information Centers throughout thecommission offices. The centers will be staffedby mentors who are parents of children with special needs and will provide support to families of individuals with special needs. Parents and caregivers have the opportunity to connect with another parent or caregiver with a similar situation or special health care need.

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policy work, training and education in this area.

Kentucky Cabinet for Health and Family Services2050 Creative Drive #160Lexington, Ky. 40505 / (859) 246-2070

Kentucky Comprehensive Care Centerswww.arcofky.org/compcare Four Rivers Behavioral Health 425 Broadway, Paducah, Ky., 42001(270) 442-5088 / 24-hour Line (800) 592-3980 Serving Ballard, Calloway, Carlisle, Fulton, Graves, Hickman, Livingston, Marshall, McCracken counties.Pennyroyal MH / MR BoardPO Box 614, Hopkinsville, Ky., 42241(270) 886-5163 or (270) 886-9371 Serving Caldwell, Christian, Crittenden, Hopkins, Lyon, Muhlenburg, Todd, Trigg counties.River Valley Behavioral Health, Inc.1100 Walnut Street, Owensboro, Ky., 42301(270) 689-6879 Serving Davies, Hancock, Henderson, McLean, Ohio, Union, Webster counties.LifeskillsPO Box 6499, Bowling Green, Ky., 42102 (270) 842-0161 Serving Allen, Barren, Butler, Edmonson, Hart,

www.Bluegrass.org Serving Anderson, Bourbon, Boyle, Clark, Estill, Fayette, Franklin, Garrad, Harrision, Jessamine, Lincoln, Madison, Mercer, Nicholas, Powell, Scott counties.

Kentucky PTAP.O. Box 654, Frankfort, Ky., 40602(502) [email protected] www.kypta.org

Kentucky Council for Children with Behavior Disorders [email protected]://kycec.org/ccbd_about.htm Kentucky Department of Education: Division of Exceptional Services500 Mero Street; Frankfort, Ky., 40601(502) 564-2000 [email protected] http://education.ky.gov/specialed/excep/Pages/default.aspx Oversees funding, special education programs, data collection, personnel development, monitoring of school districts, curriculum development and more.

Commonwealth Developmental Disabilities Planning CouncilDepartment for Health Services275 East Main Street; Frankfort, Ky., 40601(Cabinet address) 100 Fair Oaks Lane 4E; Frankfort, Ky., 40601(502) 564-7842 / (877) 367-5332http://www.autismlink.com/listing/kentucky_developmental_disabilities_planning_council The Commonwealth Council on Developmental Disabilities, the Kentucky University Center for Excellence (the Interdisciplinary Human Development Institute), and Kentucky Protection & Advocacy collectively gather input from consumers, family members, service providers, and policy makers to determine the primary issues affecting the lives of people with disabilities in Kentucky.

Disability Specific Web Resourceswww.disabilityresources.org The web site has a listing of several services available on the Internet.

Kentucky Education Rights Center, Inc1323 Moores Mill Road; Midway, Ky., 40347(859) [email protected] / www.edrights.com

Logan, Metcalfe, Monroe, Simpson, Warren counties.Communicare, Inc.1311 North Dixie Highway; Elizabethtown, Ky., 42701; (270) 769-3377 Serving Breckinridge, Grayson, Hardin, Larue, Marion, Meade, Nelson, Washington counties. Seven Counties Services, Inc. 3717 Taylorsville Rd.; Louisville, Ky., 40220(502) 459-5292 Serving Bullitt, Henry, Jefferson, Oldham, Spencer, Shelby, and Trimble counties.Northern Kentucky MH/MR Board 1201 South Ft. Thomas Ave.; Ft. Thomas, Ky., 41075 / (859) 781-5586 Serving Boone, Campbell, Carroll, Gallatin, Grant, Kenton, Owen and Pendleton counties.Comprehend, Inc.741 Kenton Station Road, Maysville, Ky., 41056(606) 759-7161 Serving Bracken, Fleming, Lewis, Mason, Robertson counties.Pathways, Inc.PO Box 790, Ashland, Ky., 41105

(606) 329-8588 Serving Bath, Boyd, Carter, Elliott, Greenup, Lawrence, Menifee, Montgomery, Morgan, Rowan counties. Mountain MH / MR Board150 South Front Avenue, Prestonburg, Ky., 41653; (606) 886-8572 Serving Floyd, Johnson, Magoffin, Martin, Pike counties.Ky. River Community Care115 Rockwood Lane, Hazard, Ky., 41701 / (606) 436-5761 Serving Breathitt, Knott, Lee, Leslie, Letcher, Owsley, Perry, Wolfe counties. Cumberland River MH / MR BoardPO Box 568, Corbin, Ky., 40702(606) 528-7010 Serving Bell, Clay, Harlan, Jackson, Knox, Laurel, Rockcastle, Whitley counties. Adanta MH / MR BoardAdult Clinic101 Hardin Lane, Somerset, Ky., 42501(606) 679-7348 Serving Adair, Casey, Clinton, Cumberland, Green, McCreary, Pulaski, Russel, Taylor, Wayne counties.Bluegrass MH / MR Board1351 Newtown Pike; Lexington, Ky., 40511-1277(859) 253-1686

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Kentucky First Stepshttp://chfs.ky.gov/dph/firstSteps/default.htmState Lead Agency275 E. Main St., HS2W-C, Frankfort, Ky., 40621(877) 417-8377Barren River District Point of EntryP.O. Box 6499 / 380 Suwannee TrailBowling Green, Ky., 42103(859) 901-5749 or (800) 643-6233 Counties served: Allen, Barren, Butler, Edmonson, Hart, Logan, Metcalfe, Monroe, Simpson, WarrenBig Sandy District Point of Entry104 South Front Ave., Prestonsburg, Ky., 41653(606) 886-4417 or (800) 230-6011 Counties served: Floyd, Johnson, Magoffin, Martin, PikeBluegrass District Point of Entry343 Waller Ave., Suite 201 Lexington, Ky., 40504(859) 271-9448 or (800) 454-2764 Counties served: Anderson, Bourbon, Boyle, Clark, Estill, Fayette, Franklin, Garrard, Harrison, Jessamine, Lincoln, Madison, Mercer, Nicholas, Powell, Scott, WoodfordBuffalo Trace District Point of Entry611 Forest Ave., Maysville, Ky., 41056(606) 564-3919 or (800) 335-4249 Counties served: Bracken, Fleming, Lewis, Mason, RobertsonCumberland Valley District Point of EntryP.O. Box 568, Corbin, Ky., 40702(606) 523-0229 or (800) 509-9559 Counties served: Bell, Clay, Harlan, Jackson, Knox, Laurel, Rockcastle, Whitley FIVCO District Point of Entry

5850 U.S. 60 / Box 11 Summit PlazaAshland, Ky., 41102(606) 929-9155 or (800) 650-1329 Counties served: Boyd, Carter, Elliott, Greenup, LawrenceGateway District Point of EntryP.O. Box 290, Owingsville, Ky., 40360(606) 674-3204 or (800) 942-4358 Counties served: Bath, Menifee, Montgomery, Morgan, Rowan.Green River District Point of Entry1501 Breckenridge St., Owensboro, Ky., 42301(270) 686-5982 or (888) 686-1414 Counties served: Daviess, Hancock, Henderson, McLean, Ohio, Union, Webster. Kentuckiana District Point of EntrySeven Counties Services, Inc.3717 Taylorsville Road, Louisville, Ky., 40220(502) 459-0225 or (800) 442-0087 Counties served: Bullitt, Henry, Jefferson, Oldham, Shelby, Spencer, TrimbleKentucky River District Point of Entry115 Rockwood Lane, Hazard, Ky., 41701(606) 439-1325 or (800) 328-1767 Counties served: Breathitt, Knott, Lee, Leslie, Letcher, Owsley, Perry, Wolfe.Lake Cumberland District Point of Entry113 Hardin Lane, Somerset, Ky., 42503(606) 678-2821 or (800) 378-2821 Counties served: Adair, Casey, Clinton, Cumberland, Green, McCreary, Pulaski, Russell, Taylor, Wayne.Lincoln Trail District Point of Entry108 New Glendale Road, P.O. Box 2609 / Elizabethtown, Ky., 42702(270) 737-5921 or (800) 678-1879

Counties served: Breckinridge, Grayson, Hardin, Larue, Marion, Meade, Nelson, Washington.Northern Kentucky District Point of Entry401 East 20th Street, 2nd FloorCovington, Ky., 41014(859) 655-1195 or (888) 300-8866 Counties served: Boone, Campbell, Carroll, Gallatin, Grant, Kenton, Owen, Pendleton.Pennyrile District Point of Entry735 North Drive, Hopkinsville, Ky., 42240(270) 886-5186 or (800) 609-0047 Counties served: Caldwell, Christian, Crittenden, Hopkins, Lyon, Muhlenberg, Todd, Trigg.Purchase District Point of Entry425 Broadway, Suite 204Paducah, Ky., 42001(270) 442-6223 or (800)648-6599 Counties served: Ballard, Carlisle, Calloway, Fulton, Graves, Hickman, Livingston, Marshall, McCracken. First Steps is a statewide intervention system that provides services to children with developmental disabilities from birth to age 3 and their families. Administered by the Department for Public Health in the Cabinet for Health and Family Services, First Steps offers comprehensive services through community agencies and service disciplines. Children who participate in early intervention have significant improvement in development and learning. Helping to decrease the problems early in a child’s development can reduce or prevent costly educational programs in the future.

Kentucky Division of Protection and Permanency275 E. Main St., 3E-A, Frankfort, Ky., 40621(502) 564-6852 / Fax: (502) 564-4653http://chfs.ky.gov/dcbs/dpp/ If you believe a child is being abused, neglected or is dependent, call the Protection and Permanency office in your county or the Toll Free Child Protection Hot Line. 1-877-KYSAFE1 or 1-877-597-2331.

Pathways to Careers and Special ProgramsCapitol Plaza Tower, Room 2113500 Mero Street, Frankfort, Ky., 40601(502) 564-3775 www.familieswithasd.org/node/147

Programs for Children with Disabilities (Ages 3 through 5)Division of Extended Learning Office of Academic and Professional Development 500 Mero Street, Capitol Plaza Tower, 17th Floor; Frankfort, Ky., 40601 / (502) 564-7056www.kde.state.ky.us(Ages Birth through 2)

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First Steps Program 3717 Taylorsville Road, Louisville, Ky., 40220 (502) 459-0225; (800) 442-0087 (502) 452-9079 (fax)http://chfs.ky.gov/dph/firststeps.htm Early Intervention Program for Infants and Toddlers with Developmental Delays: Ages Birth to 3.

Kentucky Protection & Advocacy100 Fair Oaks Lane, Third FloorFrankfort, Ky., 40601(800) 372-2988/ (502) 564-2967www.kypa.net Mission is to protect and promote the rights of Kentuckians with disabilities through legally based individual and systemic advocacy, and education. Staff includes professional advocates and attorneys.

Kentucky Self-Advocates For FreedomGreater Lexington ChapterPO Box 23555, Lexington, Ky., 40523 Debbie Sharon (859) 552-9898 Central Ky. Lexington ChapterJennifer Hollis (859) 806-9316http://kyselfadvocates.com Funded by the Kentucky Council for Developmental Disabilities, KSAFF is a statewide organization directed by Kentuckians with disabilities and committed to working in partnership with all interested parties to promote equal rights, inclusion, self-advocacy, support and education in all realms of life. The goals are: Speak Up: Self-Advocates speak up for themselves and teach, coach and support others to speak up for themselves. Your Rights: Self-Advocates are encouraged to know and exercise their rights. Education: Self-Advocates are encouraged to inform and educate the general public about rights, needs and issues regarding people with developmental disabilities. Involvement: Participate in decision-making forums regarding policies that impact people with developmental disabilities. Raise Funds: Advocate for funding for services and supports on behalf of people with developmental disabilities.

Kentucky Special Parent Involvement Network, Inc. (KY-Spin)10301-B Deering Rd.; Louisville, Ky., 40272(502) 937-6894/ (800) 525-7746/ Fax (502) 937-6464www.kyspin.com KY-SPIN, Inc. is a non-profit organization dedicated to promoting programs that enable persons with

disabilities and their families to enhance their quality of life. Fully 85% of all program income goes to direct services to families.

R.E.A.C.H of Lousiville501 Park Ave. Louisville, Ky., 40208(502) 585-1911http://reachoflouisville.com

Seven Counties Comprehensive Care ServicesAppointments: (502) 589-1100(800) 264-8799/ TDDwww.sevencounties.org A community behavioral health and developmental services center serving Bullitt, Henry, Jefferson, Oldham, Shelby, Spencer and Trimble counties. The vision of Seven Counties Services is that all persons affected by mental illness, developmental disabilities, addictions and abuse live satisfying, productive and valued lives. Website includes a 93-page Resource Book called “Build Your Future.”

State Services for Kentuckians with DisabilitiesKATS Network Coordinating CenterCharles McDowell Center8412 Westport Rd., Louisville, Ky., 40242(502) 429-4484/ (800) 327-5287http://www.katsnet.org/publications/other/stateservices.html

United Partners in Kentucky UP in Kentucky is a functional, non-compensated partnership to enhance each others’ work on behalf of children, youth and young adults with disabilities and their families. The intention is to collaborate with each other, reduce duplication of effort and help determine and influence policies.www.up-in-ky.com

The Kentucky Office of Vocational Rehabilitationhttp://ovr.ky.gov/Office of Vocational Rehabilitation Central OfficeCabinet for Human Resources Building275 E. Main St., Mail Stop 2E-K, Frankfort, Ky. 40621Bowling Green(270) 746-7489 / (800) 443-6055 (800) 246-6193 (TTY)Elizabethtown(270) 766-5121 / (866) 883-0001Florence(859) 371-9450 / (877) 371-9451Bluegrass/Lexington(859) 246-2185 / (888) 211-7276 (888) 900-9098 (TTY)

Middletown/Louisville(502) 254-3195 / (866) 304-1958Whitesburg(606) 633-2568West Liberty(606) 743-7978 / (800) 440-2530Louisville(800) 456-3334Madisonville(270) 824-7549 / (888) 640-2713Owensboro(270) 687-7308 / (888) 564-2811(800) 241-5821 (TTY)Paducah(270) 575-7304Ashland(606) 920-2338Carl D. Perkins Center(606) 788-7080 (V/TTY) or (800) 443-2187

Kentucky Youth Advocates1001 Bluegrass Parkway, Suite 100Jeffersontown, Ky., 40299(502) 895-8167 / (888) 825-5592http://kyyouth.org

disabilitieslearning

The Curious Edge – The Reading RoomWorking with children with dyslexia3306 Clays Mill Road, Suite 203Lexington, Ky., 40503(859) 899-EDGE (3343)www.thecuriousedge.com

Learning Disabilities Association of Kentucky 2210 Goldsmith Lane, Suite 118Louisville, Ky., 40218(502) 473-1256 / www.LDAofky.org This comprehensive mental health professional program includes the “co-morbid” disorders often found with individuals with learning disabilities, including Anxiety, Depression, Obsessive Compulsive Disorder, Anger Control/Bipolar Disorder, and ADHD.

The International Dyslexia Assn. – Ky. Branch1750 Beaver Road, Walton, Ky., 41094(859) [email protected] Dyslexia Solutions Inc. (502) 499-2744 / [email protected] www.readfluent.com

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Kentucky Children’s HospitalUniversity of Kentucky, 800 Rose Street, Lexington, Ky. 40536 (859) 257-1000/ (800) 333-8874www.ukhealthcare.uky.edu/KCH/ Established in 1957, UK HealthCare consists of the medical, nursing, health sciences, public health, dental and pharmacy patient care activities of the University of Kentucky, and in several off-site locations.

The Kidz Club7140 Preston Highway, Louisville, Ky., 40219(502) 368-9318225 N. 25th Street, Louisville, Ky., 40212(502) 365-2426527 Watson Road, Erlanger, Ky., 41018(859) 727-07001721 Maywick View Lane, Lexington, Ky., 40504(859) 224-0799www.thekidzclub.com The Kidz Club is a prescribed pediatric extended care facility that provides skilled nursing care for children who are medically fragile in a day care setting. Kidz Club children range from having highly complex medical conditions to kids that simply need to be monitored or have medication delivered. The Kidz Club provides educational enrichment, therapy follow-through, field trips and activities in a fun and social setting. Transportation can be provided. Medicaid and private insurance accepted. There are no costs to the child or their family.

Julie Kraska, OTR/L Kraska & Associates, Inc. 437 Lewis Hargett Circle Suite 120Lexington, Ky. 40503 (859) 219-0956 Private practice providing occupational and speech therapy services. Family-centered approach. Areas of specialty include sensory integration, sensory processing disorder, fine motor/handwriting, dyspraxia, autism, Asperger’s, articulation, phonological disorders, reading programs

Safe Kids Fayette County CoalitionKentucky Children’s Hospital800 Rose St., Lexington Ky. 40536(859) 323-1153http://ukhealthcare.uky.edu/safekids/ Safe Kids Fayette County is a program of Kentucky Children’s Hospital in Lexington and one of more than 650 grassroots coalitions in all 50 states and 17 countries, the District of Columbia and Puerto Rico that brings together health and safety experts, educators, corporations, foundations, governments and volunteers to educate and protect families. Safe

Dyslexia Association of the Pennyrile3000 Canton, Suite 4 D, Hopkinsville, Ky., 42240 (270) 885-5804 www.hopkinsvilledyslexia.org

LD OnlineThe world’s leading website on learning disabilities and ADHD.www.ldonline.org/ldresources/local_org/kentucky.html

Ohio Valley Branch of the International Dyslexia Association317 East Fifth Street; Cincinnati, Ohio 45202(513) 651-4747http://cincinnatidyslexia.org/ A non-profit, scientific and educational organization dedicated to the study and treatment of dyslexia. This Branch was formed to increase public awareness of dyslexia in the Southern Ohio, Southeast Indiana, Kentucky and Huntington, West Virginia areas.

Progressive Educational Program, Inc.212 Venture Way, Somerset, Ky., 42503 Phone: (606) 677-2514Website: www.WeTeachSpelling.comEmail: [email protected] Specializing in tutoring children with Dyslexia.Joni Strickland, Director of Tutoring Service and Karen Cress, Certified Dyslexia Tester.

medicalBrain Injury Alliance of Kentucky7410 New Lagrange Road, Suite 100Louisville, Ky., 40222 / (502) 493-0609www.biak.us

Cardinal Hill Rehabilitation HospitalCardinal Hill Rehabilitation Hospital2050 Versailles Road, Lexington, Ky., 40504(859) 254-5701Cardinal Hill Center for Outpatient Services2050 Versailles Road, Lexington, Ky., 40504(859) 367-7125Cardinal Hill Home Care2050 Versailles Road, Lexington, Ky., 40504(859) 367-7148Cardinal Hill Rehabilitation Center/Easter Seals of Louisville9810 Bluegrass Parkway, Louisville, Ky., 40299(502) 584-9781Cardinal Hill of Northern Kentucky31 Spiral Drive, Florence, Ky., 41042(859) 525-1128

Charles L. Shedd Kentucky Association4801 Sherburn Ln. LL1Louisville, Ky. 40207; (502) 893-0309 [email protected] http://www.sheddtutoring.org The Shedd Program provides educational remediation through highly structured teaching methods and materials utilizing a multisensory approach and one-to-one instruction.

Cincinnati Children’s HospitalCenter for Infants and Children with Special Needs; Cincinnati Children’s Hospital Medical Center; MLC 7009 3333 Burnet Avenue, Cincinnati, Ohio 45229(513) 636-4200/ (800) 344-2462/ TTY: (513) 636-4900www.cincinnatichildrens.org/svc/alpha/c/special-needs/default.htm

Dr. F. Allen Walker Creative Psychiatry P.L.L.C.10200 Forest Green Blvd. Suite 401Louisville, Ky. 40222; Office: (502-384-ADHD (2343)[email protected]

Robert A. Underwood, Ph.D. & Byron White, Psy.DEdelson and Associates, PSC 7511 New LaGrange Rd. Louisville, Ky. 40222 (502) 423-1151 Email: [email protected]@npsych.infoWeb: http://www.edelsonandassociates.info Neuropsychological, ADHD, Learning Disability, Autism and Psychological Disorder Evaluations.

Horn, Richardson & Associates in Rehabilitation2412 Greatstone Point, Lexington, Ky. 40504 (859) 224-4081 / (859) 224-4261www.hornrichardson.com HRA offers assessments and intervention from a multi-disciplinary team including physical therapy, occupational therapy, speech-language pathology, psychology, developmental intervention, social work and case management. HRA provides independent evaluation and intervention services. HRA addresses concerns of the individual, family and referral sources including physicians, schools and other agencies. Families are encouraged to participate through evaluations and therapy, and a focus is placed on providing services that can generalize into academics, home, community and job settings.

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Kids Fayette County Coalition is a member of Safe Kids Worldwide, a global network of organizations dedicated to preventing accidental injury. Efforts are needed because as many as 90% of accidental injuries can be prevented.

Safe Kids Coalition Kentucky Led by Kentucky Department of Health333 Waller Ave, Lexington, Ky. 40504(859) 323-6194; www.safekids.orgBarren County Barren River District Health Department318 West Washington, Glasgow Ky. 42141(270) 651-8321 Louisville and Jefferson County Kosair Children’s Hospital315 E. Broadway, Louisville, Ky. 40202(502) 629-7335River Cities Communities King’s Daughters Medical Center2201 Lexington Ave., Ashland, Ky. 41101(606) 408-4000

SKY Pediatric Dentistry Dr. Mandy Ashley DMD, MsEd, MS 727 US-31 W. Bypass, Suite 101Bowling Green, Ky., 42101

Community Care is working toward in the Cincinnati and Northern Kentucky areas with a comprehensive continuum of mental health, developmental disability and substance abuse care.

healthmental

bluegrass.org1351 Newtown Pike, Lexington, Ky. 40511 (859) 253-1686 / 24-hr crisis line:(800) 928-8000www.bluegrass.org Bluegrass.org has served the seventeen county Bluegrass Area for over 45 years, assisting individuals and families in the enhancement of their emotional, mental and physical well-being by providing behavioral health, intellectual/developmental

disabilities and substance abuse services.

The Kentucky Association of Mental Health/Mental Retardation Programs152 West Zandale Drive, Suite 201, Lexington, Ky., 40503; (859) [email protected]

Cedar Lake7984 New LaGrange Rd., Louisville, Ky. 40222(502) 425-5323www.cedarlake.org Cedar Lake is a private not-for-profit association that incorporated out of common concern for persons with mental retardation and the lack of adequate residential facilities within the area. Cedar Lake was founded in 1970 by Louisville-area parents of persons with intellectual disabilities. Cedar Lake Lodge began providing campus services in 1974, and added “community-based” service options, Cedar Lake Residences, in 1989. Collectively, Cedar Lake operations employ more than 300 staff members and have an annual operating budget in excess of $15 million, providing services to approximately 200 individuals with intellectual and developmental disabilities.

Division of Developmental and Intellectual Disabilities 100 Fair Oaks Lane 4W-C, Frankfort, Ky. 40621(502) 564-7702; TTY: (502) 564-5777http://dbhdid.ky.gov/ddid/default.aspIt is the mission of the Division of Developmental and Intellectual Disabilities (DDID) to empower each person to realize his or her place in the community as a citizen of the Commonwealth of Kentucky. To

855-SKY-KIDS / www.skypediatricdentistry.com/ Dentistry for children and teens with special needs.

Square One Specialists in Child and Adolescent Development6440 Dutchmans Parkway, Louisville, Ky. 40205 (502) 896-2606 [email protected] Comprehensive Evaluations: Medical, psychological, psychiatric, educational, and speech-language evaluations are offered to help understand differences that impact children’s and adolescents’ development, behaviors, and emotions. University of Kentucky School of Psychology Clinic641 Maxwelton Ct., Lexington, Ky. 40506(859) 257-1381 Psychoeducational assessments, intervention and consultation services to address behavioral, academic, and social-emotional concerns which impact an individual’s learning and development.

University of Louisville Kosair Children’s Hospital231 E. Chestnut Street, Louisville, Ky.

(502) 629-6000www.kosairchildrenshospital.com Kosair Children’s Hospital is a 253-bed teaching facility and serves as a referral center for central and western Kentucky, and southern Indiana. The hospital is also the primary pediatric teaching hospital for the University of Louisville health sciences program. Each year there are approximately 8,000 admissions, 50,000 Emergency Department visits and 10,500 outpatient clinic visits.

Dental Care in Northern Kentucky for Special NeedsDonated Dental Services(888) 765-6789

Health Point Family Care, Covington(859) 655-6100

NorthKey Community 502 Farrell Dr., PO Box 2680; Covington, Ky. 41011(859) 331-3292/ TTY www.northkey.orgServing Boone, Campbell, Carroll, Gallatin, Grant, Kenton, Owen and Pendleton. Paving the way to a community healthy in mind and spirit -- that’s what NorthKey

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accomplish this mission, DDID will partner with and support persons with intellectual or developmental disabilities, families, advocates, stakeholders and government agencies.

Mental Health America of Kentucky120 Sears Avenue, Suite 213, Louisville, Ky. 40207 (502) 893-0460; (888) [email protected] / www.mhaky.org

Mental Health Association of Northern Kentucky513 Madison Ave., Covington, Ky. 41011(859) 431-1077www.mhanky.org/mha/asp/home.asp

NAMI Kentucky (National Alliance for the Mentally Ill)c/o Somerset Community College808 Monticello St., Somerset, Ky. 42501(606) 451-6935 / (606) 451-6936(800)257-5081 / [email protected] http://ky.nami.orgNAMI Bowling Green Theresa Eddy (270) [email protected] Buffalo Trace (Maysville)Sharon Darnell (606) [email protected] Cumberland RiverWayne Bullock (606) 256-9250NAMI DanvilleLois Anderson (859) [email protected] NAMI HazardJaunita Bartley (606) [email protected] HeartlandSteve Alexander (270)351-3730 [email protected] Henderson/Webster CountyBeverly Jones (270) [email protected] HopkinsvilleMarcia and Jerry Bell (270) [email protected] LexingtonTheresa Walton, President (859)-272-7891Phill Gunniing Executive [email protected] LouisvilleGeorge Hersch (502) [email protected] MadisonvilleMary Poole, President (270) [email protected] April Schmitt (270) [email protected]

NAMI MoreheadCarol Mauriello (606) 356-8184 [email protected] Nelson CountyGary Barr, President (502) 452-7133or (502) 331-9991 / [email protected] Northern KentuckyKathy Keller (859) [email protected] OwensboroJohn Griffith (270) 689-1999 [email protected] PaducahBalinda Hudson (270) [email protected] SomersetCharlotte Stogsdill (606) 274-4565 [email protected] WinchesterBrenda Harrington (859) [email protected]

supportparent

Kentucky Partnership for Families and Children 207 Holmes Street; Frankfort, Ky., 40601 (502) 875-1320 / (800) [email protected]

The Council on Developmental Disabilities 1151 South Fourth Street, Louisville, Ky., 40203(502) 584-1239 / [email protected] www.councilonmr.org The Council on Developmental Disabilities, a private non-profit parent association, was founded in 1952 by a small band of parents seeking educational services for their children with disabilities. The goal of these parents was to have a full array of services and programs to meet the unique and individual needs of their children.

hearing & languagespeech

Lexington Hearing and Speech Center 350 Henry Clay Blvd. Lexington, Ky., 40502(859) 268-6153 / www.lhscky.org Provides diagnostic, therapeutic and educational services for individuals with hearing, speech and language impairments.

Kentucky Association of the Deaf

PO Box 463 Danville, Ky., 40423-463www.kydeaf.org

Kentucky Commission on the Deaf and Hard of Hearing632 Versailles Road, Frankfort, Ky., 40601(502) 573-2604 (V/TTY); (800) 372-2907 (V/TTY, in Kentucky only)Email: [email protected]: www.kcdhh.org

Kentucky School for the Deaf303 South Second St., P.O. Box 27Danville, Ky., 40422(859) 239-7017http://www.ksd.k12.ky.us/ Ensures that deaf and hard of hearing children and youth have educational opportunities to develop their potential to become educated, life-long learners and productive citizens. Kentucky Speech-Language-Hearing Association (KSHA)838 E. High St., Suite 263, Lexington, Ky., 40502(800) 837-2446 www.ksha.info The mission is to enhance the provision of quality services to persons with communication disorders and their families. KSHA provides broad-based education opportunities, public awareness and policy development initiatives, and by supporting professionals in speech-language pathology and audiology by promoting the highest standards for service providers.

St. Rita School for the Deaf1720 Glendale Milford Rd; Cincinnati, Ohio, 45215; (513) 771-7600; (Video Phone): (513) 771-0310; http://srsdeaf.org

dogsservice

4 Paws for AbilityUniversity of KentuckyInfo: [email protected]/lmbrig2/4-paws-at-uk

Kentucky Working K-9 AcademyService Dogs for the Disabled2856 Lilac Road, Leitchfield, Ky., 42754(270) 259-3647www.kentuckyworkingk9.com

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TOPSoccer is community-based and designed to meet the needs of athletes with physical, developmental and/or intellectual disabilities.

Legacy Gymnastics261 Ruccio Way, Lexington, Ky. (859) 977-8862www.legacy-gymnastics.com Carousel Kidz is a program to meet your child’s special needs with one-on-one gymnastics and dance lessons.

Central Kentucky Riding for Hope PO Box 13155, Lexington, Ky., 40583 (859) [email protected] / www.ckrh.org Operated at the Kentucky Horse Park Under the guidance of trained teachers, volunteers and medical people, disabilities are challenged and new abilities are created. The program has proved successful in helping people with a wide range of disabilities develop self-esteem, confidence, coordination and a sense of achievement while learning horsemanship and track riding principles.

Cerebral Palsy K.I.D.S. Center Kids Center for Pediatric Therapies982 Eastern Parkway, Louisville, Ky., 40217 (502) 635-6397 http://www.firstgiving.com/kidscenter Since 1959, the Kids Center has served families of children with Down syndrome, spina bifida, cerebral palsy, autism, seizure disorders, and a number of other developmental conditions.

Crohn’s & Colitis Foundation of AmericaKentucky Chapter P.O. Box 573, Prospect, Ky. 40059(646) 623-2620 / [email protected]/chapters/kentucky/

National Multiple Sclerosis SocietyKentucky-Southeast Indiana Chapter1201 Story Avenue, Suite 200Louisville, Ky., 40206(502) 451-0014Nationalmssociety.org

Tourette Syndrome AssociationLexington Support Group / (859) [email protected] Support Group / (502) 852-7528 [email protected] / www.tsa-usa.org

YMCA of Central Kentucky (859) 367-7355www.ymcaofcentralky.org Y

Family Eyecare Associates and Dr. Rick Graebe offer the best available eyecare for the entire family. This includes computerized exams for children and adults; and quality eyeglasses, sunglasses and contact lenses. In addition to general optometric services, Family Eyecare offers unique programs such as Vision Therapy for children experiencing difficulty with reading and/or underachievement at school. Children in these programs average more than a 3-year improvement in performance in 10 to 15 weeks.

Kentucky School for the Blind Division of the Kentucky Department of EducationOffice of Special Instructional Services 1867 Frankfort Avenue, Louisville, Ky., 40206(502) 897-1583 / www.ksb.k12.ky.us/ A K-12 public school serving Kentucky students who are blind and visually impaired, offers Short Course program (1-12 weeks) of specialized instruction available to students throughout the school year. Summer school programs are offered in June and July.

Visually Impaired Preschool Service (VIPS)Greater Louisville1906 Goldsmith Lane; Louisville, Ky., 40218(502) 636-3207; (888) 636-8477www.vips.orgVIPS-Central Kentucky161 Burt Road, Suite #4, Lexington, Ky., 40503(859) 276-0335 / (888-254-8477)www.vips.org The Mission of Visually Impaired Preschool Services, Inc. is to offer appropriate services to infants, toddlers and preschoolers who are visually impaired or blind and to their families; and to maximize each child’s development potential through direct services, advocacy and community education. VIPS staff includes certified teachers who specialize in early childhood education, visual impairment, O&M, and special education. Several staff members are also parents of visually impaired children.

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Toyota Bluegrass Miracle LeaguePlays at Shillito Park in LexingtonNorth Lexington YMCA / (859) 258-9622www.bluegrassmiracleleague.orgFacebook: Toyota Bluegrass Miracle League

LYSA’s TOPSoccer ProgramLexington, Ky. / (859) 223-5632 www.lysa.org

bifidaspina

Cardinal Hill Rehabilitation HospitalCardinal Hill Rehabilitation Hospital2050 Versailles Road, Lexington, Ky., 40504(859) 254-5701Cardinal Hill Center for Outpatient Services2050 Versailles Road, Lexington, Ky., 40504(859) 367-7125Cardinal Hill Home Care2050 Versailles Road, Lexington, Ky., 40504(859) 367-7148Cardinal Hill Rehabilitation Center/Easter Seals of Louisville9810 Bluegrass Parkway, Louisville, Ky., 40299(502) 584-9781Cardinal Hill of Northern Kentucky31 Spiral Drive, Florence, Ky., 41042(859) 525-1128

Spina Bifida Association of KentuckyKosair Charities Centre982 Eastern Parkway, Box 18, Louisville, Ky., 40217(502) 637-7363 / (866) [email protected] / www.sbak.org SBAK is a resource center that provides free services and programs to children and adults with Spina Bifida and their families. The mission is to promote the prevention of Spina Bifida and to enhance the lives of all affected. Have you had your recommended daily dose of Folic Acid? Remember, 400mcg of Folic Acid taken before pregnancy can reduce the risk of having a child with Spina Bifida by 70%.

Shriner’s Hospital for ChildrenSpina Bifida Program(Orthopedica clinic only) 1900 Richmond Road, Lexington, Ky., 40502(859) 268-5742 / www.shriners.net

visionDepartment for the Blind 275 E. Main St., Frankfort, Ky., 40601(800) 321-6668/ (502) 782-3414http://blind.ky.gov/

Family Eyecare Associates & Children’s Vision and Learning CenterDr. Rick Graebe105 Crossfield Drive, Versailles, Ky., 40383(859) 879-3665/ (855) 686-2020www.myfamilyvision.com

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Robert L. McClelland is a Member of:Special Needs Alliance

Kentucky Guardianship Association Board MemberPrivate Special Needs Trustee

Chair, Kentucky Bar Association Elder Law Committee

McClelland & Associates, PLLC1795 Alysheba Way, Suite 2102, Lexington, KY 40509

(859) 543-0061www.elderlawlexington.com

3 Biggest Mistakes that Family’s with Special Needs Can Make• NotHavingaSpecial NeedsTrust In Place• NotHaving a Guardian Chosen• Not Planning for SSI/ Medicaid

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