2018 health, technology and the family caregiver · empowering families of individuals with...

THURSDAY, OCTOBER 11. 2018RENAISSANCE WOODBRIDGEISELIN, NEW JERSEY

An Insightful Day of Learningwith Innovators and Thought Leaders

2018

HEALTH,TECHNOLOGYAND THEFAMILY CAREGIVER

FamilySupport Act 1993

Anniversar y

Empowering familiesof individuals with

intellectual and developmental

disabilities to

AdvocateCollaborate

EducateNew Jersey

REGIONALFAMIL SUPPORTRFNEW JERSEY

PLANNING COUNCILwww.facebook.com/NJFSPC

njcdd.org

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onNew Jersey Council

Developmental Disabilities

At Eisai, human health care is our goal. We give

our fi rst thoughts to patients and their families

as well as helping to increase the benefi ts health

care provides. Our therapies are designed

to make a difference and have an impact on

patients’ lives. We are Eisai, where medicine is

more than just our business — it’s our passion.

Eisai is proud to support National Caregivers

Conference.

Our passion ignites progress

CORP-US0024 ©2018 Eisai Inc. All rights reserved. Sep 2018 www.eisai.com/us

CONTENTS

4 WELCOME

This year, the National Caregivers Conference ispleased to present “Health, Technology and TheFamily Caregiver,” focusing on the critical impor-tance of caregivers in this country.

6 CONFERENCE AGENDA

The National Caregivers Conference includes awide variety of workshop sessions, an extensiveexhibit hall, respite care, and much more.

8 SESSION DESCRIPTIONS

Advances in health and technology have the capac-ity to significantly transform the role of 40 millionfamily caregivers nationwide.

14 NEVER LOOK BACK: THE FAMILYSUPPORT ACT

The Family Support Act is turning 25! Join us forour special Luncheon Celebration at 12 pm.

16 CONFERENCE PRESENTERS

The National Caregivers Conference is renownedfor its national level speakers, workshops andexhibitors who address both individual andnational issues facing the caregiver community.

28 RESPITE

While everything in the world seems to be movingtoo fast, one term comes to mind.By Adeola Sonaike, PHD, MPH, CHES

32 CAREGIVER SHARK TANK

The National Caregivers Conference has invitedinventors, innovators, and researchers to showcasetheir transformative ideas, products and concepts.

CAREGIVER OUTLOOK

CAREGIVER OUTLOOK

HEALTH, TECHNOLOGY AND THE FAMILY CAREGIVER

HEALTH, TECHNOLOGY AND THE FAMILY CAREGIVER 3

THURSDAY, OCTOBER 11. 2018RENAISSANCE WOODBRIDGEISELIN, NEW JERSEY

© The Family Resource Network 2018

4 THE NATIONAL CAREGIVERS CONFERENCE 2018

WELCOMEThis year, the National Caregivers Conference is pleased to present “Health, Technologyand The Family Caregiver,” focusing on the critical importance of caregivers in this country. The conference will concentrate on the critical importance of caregivers and the advancestechnology is having on caregiving. The Conference will direct caregivers towards informa-tion on easily accessible, cost effective supports to all populations, regardless of age or dis-ability.

WHO WE ARE

The Family Resource Network isdedicated to offering individualsand their families with continuingneeds the greatest opportunities,resources and services to support afull and happy life. The Network isdedicated to providing a centralpoint of contact on caregivingissues, resulting in more effectiveinformation dissemination,increased support, awareness andadvocacy.

WHAT WE DO

The National CaregiversConference is renowned for itsnational level speakers, workshopsand exhibitors who address bothindividual and national issues fac-ing the caregiver community. The2018 National CaregiversConference, “Health, Technology,and the Family Caregiver,” bringsinnovative solutions to the increas-ing demand on family caregiversacross the nation while showcasingexciting projects that use technolo-gy to improve the health and quali-ty of life of caregivers and theirloved ones.

WHY US?

There are over 40 million familycaregivers in the nation providing24/7 care to a loved one who isaging, has a disability, has a chroniccondition, or is a veteran. TheNational Caregivers Conference isbringing fellow leaders and influ-encers together who are dedicatedto improving the lives of caregiversthrough innovation and collabora-tion. Join us at this annual event,and be at the forefront of a techno-logical shift in caregiving.


horizonNJhealth.comProducts are provided by Horizon NJ Health and Horizon Blue Cross Blue Shield of New Jersey, both of which are independent licensees of the Blue Cross and Blue Shield Association. Communications are issued by Horizon Blue Cross Blue Shield of New Jersey in its capacity as administrator of programs and provider relations for all its companies. The Blue Cross® and Blue Shield® names and symbols are registered marks of the Blue Cross and Blue Shield Association. © 2018 Horizon Blue Cross Blue Shield of New Jersey. Three Penn Plaza East, Newark, New Jersey 07105. EC00xxxx

Horizon NJ Health is a proud supporter of the National Caregivers

Conference

horizonNJhealth.comProducts are provided by Horizon NJ Health and Horizon Blue Cross Blue Shield of New Jersey, both of which are independent licensees of the Blue Cross and Blue Shield Association. Communications are issued by Horizon Blue Cross Blue Shield of New Jersey in its capacity as administrator of programs and provider relations for all its companies. The Blue Cross® and Blue Shield® names and symbols are registered marks of the Blue Cross and Blue Shield Association. © 2018 Horizon Blue Cross Blue Shield of New Jersey. Three Penn Plaza East, Newark, New Jersey 07105. EC00xxxx

Horizon NJ Health is a proud supporter of the National Caregivers

Conference

REGISTRATION7:30AM – 9AM

BREAKFAST 7:30AM – 9AM • CRYSTAL BALLROOM / EXHIBIT HALL

WELCOMING REMARKS9:15AM – 9:30AM • DIAMOND BALLROOM

C. Grace WhitingPresident & CEO, National Alliance for Caregiving

KEYNOTE ADDRESS9:30AM – 10:15AM • DIAMOND BALLROOM

Sherri SnellingFounder/CEO of Caregiving Club

COFFEE BREAK10:15AM – 10:30AM • CRYSTAL BALLROOM / EXHIBIT HALL


CONFERENCE AGENDAThe National Caregivers Conference provides a platform for innovation and collabora-tion among thought leaders and caregivers. The Conference includes a wide variety ofworkshop sessions, an extensive exhibit hall, respite care, and much more. The work-shops and presentations center around caregiving and technology and include “UsingTelemedicine to Reduce Emergency Department Utilization for IDD Patients” and “Livingand Aging in Place: Can Your Home Handle It?” The conference will serve as a network-ing opportunity for caregivers to gain social supports, culminating with a Shark Tank-inspired Afternoon Panel featuring innovators and thought leaders presenting newideas, products and concepts.



MORNING BREAK OUT SESSIONS10:45AM – 12PM

LUNCH AND LUNCHEON CELEBRATION OF NJ FAMILY SUPPORT ACT12PM – 1:30PM • DIAMOND BALLROOM

AFTERNOON BREAK OUT SESSIONS1:45PM – 3PM

AFTERNOON SNACK/COFFEE BREAK3PM – 3:30PM • CRYSTAL BALLROOM / EXHIBIT HALL

AFTERNOON PANEL: CAREGIVERS SHARK TANK 3:45PM – 5PM • DIAMOND BALLROOM

CALL TO ACTION PANEL

SILVER HALL

Donna Meltzer, CEO, National Association OfCouncils On Developmental Disabilities,

Connie Siskowski, RN, PhD, President & Founder,American Association of Caregiving Youth,

Crystal McDonald, Associate State Director ofAdvocacy, AARP New Jersey

CAREGIVING IS BAD FOR YOUR HEALTH!LET’S GIVE THEM A BREAK!

SAPPHIRE HALL

Lois Sheaffer, National Director, REST

USING TELEMEDICINE TO REDUCEEMERGENCY DEPARTMENT UTILIZATION

FOR IDD PATIENTS

RUBY HALL

Matthew Kaufman, MDCEO, Station MD

MY PREF APP FOR CHILDRENWITH AUTISM

GOLD HALL

Euric V. Guerrero, BCBA, MAAssistant Clinical Director, The COR Behavioral

Group

HEALTH CONNECTIONS PANEL

GOLD HALL

Aviva Woog, Advocacy Manager,WellCare Health Plans New Jersey,

Kyllian Warman, Specialist, Fitness and EndurancePrograms, St. Jude Memphis Marathon,

ALSAC /St. Jude Children’s Research Hospital,Lisa Lewis, MBA, MPH, Caregiver, Alzheimers

Association

MOTIVATIONAL INTERVIEWING: A TOOLFOR SUPPORTING HEALTH CHANGE

RUBY HALL

Lazara Paz-Gonzalez, Program Coordinator,Healthcare Quality Strategies Inc (HQSI)

ALTERNATIVE CONNECTION PANEL

SILVER HALL

Thomas M. Chamberlain, PharmD,Founder & CEO, Ed Logics,

David S. Duplay, Founder & CEO, Healtheo360,Paula Muller, Founder, Sociavi Company

LIVING AND AGING IN PLACE: CAN YOURHOME HANDLE IT?

SAPPHIRE HALL

Michael Lozinski, M.A.T., ATP, Assistive TechnologySpecialist, Advancing Opportunities,

Garth Heid, ATP Assistant Director Of AssistiveTechnology Services, Advancing Opportunities



WELCOMING REMARKS 9:15AM – 9:30AMDIAMOND BALLROOM

C. Grace Whiting, JDPresident & CEO, National Alliance for Caregiving

Caregiving is truly an international phenomenon. Nonation is without family caregivers, and the ways inwhich nations support the needs of caregivers aremany. Ms. Whiting will discuss how caregiving isbecoming a growing public health issue in the UnitedStates and the Nations response through research,innovation and advocacy.

KEYNOTE ADDRESS: SEVEN WAYS TOCAREGIVER WELLNESS 9:30AM – 10:15AMDIAMOND BALLROOM


More than 65 million Americans are caring for aloved one with a chronic illness or disease. It maybe an older parent, spouse, special needs child, sib-ling or friend. But we are woefully unpreparedwhen we step into our caregiving role and may notrealize the special challenges we face especially toour own health and wellness. Sherri Snelling will

help caregivers understand how to identify andmanage stress, avoid burn-out, escape social isola-tion, banish guilt and deal with depression – allthings we know can lead to caregiver health risks.Her talk, “Seven Ways to Caregiver Wellness” includ-ing her Me Time Monday™ program focuses on tipsand resources to plan ahead for the financialimpacts of caregiving, find support, use technology,experience happiness and joy and balance self-carewhile caregiving.

CALL TO ACTION PANEL 10:45AM – 12:00PMSILVER HALL

Donna Meltzer, CEO, National Association OfCouncils On Developmental Disabilities, ConnieSiskowski, RN, PhD, President & Founder, AmericanAssociation of Caregiving Youth and CrystalMcDonald, Associate State Director of Advocacy,AARP New Jersey

The need to support the nation’s nearly 44 millionfamily caregivers and sustain them as the backbone ofour chronic and long-term care system is a centralissue in national and state efforts to reform health-care. This panel will discuss leading advocacy andpublic policy efforts impacting caregivers.

SESSION DESCRIPTIONSAdvances in health and technology have the capacity to significantly transform the roleof 40 million family caregivers nationwide.



CAREGIVING IS BAD FOR YOUR HEALTH!LET'S GIVE THEM A BREAK! 10:45AM – 12:00PM SAPPHIRE HALL

Lois Sheaffer, National Director, REST

A Prescription for Respite to delay Long Term CarePlacement “needs an all hands-on deck approach.”Healthcare and Insurance Companies must begin toprovide a prescription for a respite break whichrequires just a co-pay from the caregiver. Respite isrequested by Caregivers often; however, respite is typi-cally unaffordable, unavailable, and delivered byuntrained respite providers. Friends and Families arewilling to be trained to help! Training both a paid andunpaid respite workforce gives all caregivers regardlessof income the ability to have greater access to respite.

USING TELEMEDICINE TO REDUCEEMERGENCY DEPARTMENT UTILIZATIONFOR IDD PATIENTS 10:45 – 12:00PMRUBY HALL

Matthew Kaufman, MDCEO, Station MD

Studies show that adding a telemedicine servicespecifically for the IDD population reduces ER use, keepspatients in place, avoids disruptions in routines, providesimmediate access to a physician, drastically reducescosts and improves both staff and patient satisfaction.A patient requiring medical attention is often sent tothe ER for an evaluation by a physician. Transportationis arranged, and staffing is added to accompany thepatient. In the ER, the patient endures hours of wait-ing and is often subject to unnecessary diagnostics.The trauma of this type of transfer can be avoidedwith the implementation of a telemedicine solution.

MY PREF APP FOR CHILDRENWITH AUTISM 10:45 – 12:00PMGOLD HALL

Euric V. Guerrero, BCBA, MAAssistant Clinical Director, The COR Behavioral Group

Determining effective reinforcers for people with dis-abilities is a crucial element for developing “buy-in” toacquire functional skills and reducing behaviors ofconcern. Various approaches exist to identify whichitems or activities a person prefers over another.

Come see how technology can be embraced as a medi-um to figure out how to maximize the effort put forthby your clients or loved ones. Discover the myPrefapp, a convenient, efficient way to to determine prefer-ences. Up-to-date preferences are vital to the effective-ness of any behaviorally based program and myPrefmakes performing these assessments easy and accurate.

HEALTH CONNECTIONS PANEL 1:45PM – 3:00PMGOLD HALL

Aviva Woog, Advocacy Manager, WellCare HealthPlans New Jersey, Kyllian Warman, Specialist, Fitnessand Endurance Programs, St. Jude MemphisMarathon, ALSAC /St. Jude Children’s ResearchHospital and Lisa Lewis MBA, MPH, Caregiver,Alzheimers Association

The act of caregiving can have an impact on bothphysical and emotional wellness. Caregivers general-ly experience more physical and mental health com-plications, higher mortality risks, and suffer from anincreased risk of depression and anxiety disorders,diminished immune response, slower wound healing,

Did you know?Autism has undoubtedly had a significant impact on

the nation and, in particular, the state of New Jersey.According to the Centers for Disease Control andPrevention (CDC) 2014 report, 1 in every 37 people inNew Jersey have an autism diagnosis compared to thenational average of 1 in 59 people. Raising a child withautism presents a unique set of challenges with regard toobtaining appropriate services, including adequate afterschool care and opportunities for social interaction.Autism Family Services of New Jersey is dedicated to

ensuring a better quality of life for individuals and theirfamilies affected by autism and related disorders fromdiagnosis throughout adulthood.Autism Family Services of New Jersey (AFSNJ) is a

leading provider of family support services to the autismpopulation and functions as an affiliate of The FamilyResource Network (FRN).

www.autismfamilyservicesnj.org

An Affiliate of:

Autism Family Services of NewJersey (AFSNJ) was created in orderto better serve individuals and fami-

lies affected by autism. With an array of behavioral thera-py, after school services, and scholarship opportunities,AFSNJ strives to ensure a better quality of life for peoplewith autism and their families.

Epilepsy Services of New Jersey (EFNJ),an affiliate of the National EpilepsyServices, provides necessary programs

for families living with epilepsy, such as a residential summercamp, support groups, scholarship opportunities, seizurefirst-aid and recognition training, and referral programs.

Caregivers of New Jersey’s (CNJ) isproud to offer a centralized locationfor answers and information on all

caregiving concerns. The growing number of caregivers inthe state has increased the demand for advocacy, educa-tion, information and support.

Family Support Center of New Jersey(FSCNJ) is a “one-stop shop” forindividuals searching for information

about disabilities, services and programs on national, stateand local levels. FSCNJ offers webinars, training opportuni-ties, and a lending library, all to keep families informed andinvolved in the opportunities that exist in NJ.

Our Network

Who We AreWith more than 50 programs and services available for

New Jersey residents living with epilepsy, autism, intellectu-al, developmental and physical disabilities, and chronic ill-ness, The Family Resource Network (FRN) and its affiliateshave been affecting lives of thousands of families acrossNew Jersey for the past 48 years. When you add these results to the thousands of people

we reach through our family-friendly events, such as theGlow, Walk, Run Family 5k and the Autism Beach Bash, it isclear we are making a difference in the health and happi-

ness of thousands of families.The Family Resource Network is a comprehensive family-

focused umbrella of organizations designed to meet thegrowing need for community-based programs and servicesto individuals and families with a variety of disabilities andchronic conditions through our four affiliate organizations(below). The Family Resource Network is a statewide orga-nization with offices located in Brick, Parsippany, Trentonand Barrington that serves approximately 30,000 individu-als annually.


and greater incidence of hospitalization than non-caregivers. Join these panelists as they discuss therelationship between health and caregiving and pro-vide tips and resources to improve caregiver health.

MOTIVATIONAL INTERVIEWING: A TOOL FORSUPPORTING HEALTH CHANGE 1:45PM – 3:00PM

RUBY HALL

Lazara Paz-Gonzalez, Program Coordinator,Healthcare Quality Strategies Inc (HQSI)

The aim of the workshop is to provide a comprehen-sive introduction to the theory and practice ofMotivational Interviewing (MI). Participants will learnthe fundamental spirit, strategies and principles of MI,the language of change, as well as the core counsellingskills of the approach. MI is a skill that takes practiceto learn. The simplicity of the approach is often con-fused with being easy to learn. This training reviewsthe essential elements, as well as provides informationon the process of adapting MI to various settings.

ALTERNATIVE CONNECTION PANEL 1:45PM – 3PMSILVER HALL

Thomas M. Chamberlain, PharmD, Founder & CEO,EdLogics, David S. Duplay, Founder & CEO,Healtheo360 and Paula Muller, Founder,Sociavi Company

As technology continues to evolve, we have an oppor-tunity to reach family caregivers in a variety of settingsusing innovative platforms. This panel will share lead-ing platforms that have been developed to educateand guide people through chronic disease self-man-agement, stress management, and resiliency training.

LIVING AND AGING IN PLACE: CAN YOURHOME HANDLE IT? 1:45PM – 3PMSAPPHIRE HALL

Michael Lozinski, M.A.T., ATP, Assistive TechnologySpecialist, Advancing Opportunities, and Garth Heid,ATP Assistant Director Of Assistive TechnologyServices, Advancing Opportunities

Come learn about supports available to children andadults with developmental disabilities and their care-givers to help them be independent and safe in the

home. This includes everything from home accessibili-ty (ramps, bathroom modifications, lifts), to aids fordaily living, and Smart Home Technology. Funding willalso be discussed. Our modern homes currently are notoften designed to accommodate us throughout our life-times as we change. These changes can be brought onby illness, disability, aging, or a combination of allthree, affecting everyone in the household.Fortunately, current trends in supports and fundingare leaning toward community not institutional living.Come learn what can be done with existing spaceswhen the need arises. We will outline how we evaluatehomes for accessibility, including modifications toentrances and bathrooms. Supports to help people tofind out what is available, make educated decisions,and get funding assistance are all just as important asthe equipment itself. We will help people to see what’savailable from the Technology Lending Center so thatthey can “try before they buy,” and explain the sup-ports available through funders such as theDepartment of Children and Families (DCF), theDivision of Developmental Disabilities (DDD), and theCatastrophic Illness in Children Relief Fund.

Did you know?Caregivers of New Jersey is dedicated to providing a

central point of contact on caregiving issues, resulting inmore effective information dissemination, increased sup-port and awareness and advocacy.Caregivers of New Jersey was formed in response to

the growing number of caregivers within the state. Withmore than 1.7 million caregivers in the state, Caregiversof New Jersey will work to shed light on the mountingneeds of caregivers and increased need for support,including advocating for caregivers rights.In addition, Caregivers of New Jersey has developed a

Support Coordination team which supports many of the1,850 individuals living in developmental centers whowish to be transitioned into the community. SupportCoordination is a consumer driven process where by indi-viduals choose where they would like to live and whothey would like to support them.

www.njcaregivers.org

An Affiliate of:

Upcoming Events

To Benefit:

SATURDAY, OCTOBER 27, 2018LIBERTY STATE PARK

JERSEY CITY, NJ

WWWGLOWWALKRUN.ORG

The 5th Annual Glow Walk will be held in theearly evening at 4:15 pm on October 27, at LibertyState Park in Jersey City, New Jersey. Participantswill receive glow necklaces to help “shine the lighton epilepsy” and to light the way. Children andadults are encouraged to wear costumes, as therewill be trick or treating at the rest stops along thewalk route. Remember to dress to impress, becausethere is a catwalk costume contest immediately fol-lowing the Family Fun Walk. In addition to thewalk/run, the event will also feature live music,glow in the dark games and activities, informationalexhibits and more. All activities will be free to fami-lies who register. We hope to see you there!

The Family Fun 5k Run will be held at 5:30 pm,where participants will be treated to a beautiful,panoramic view of the New York City skyline duringthe final moments of daylight and through theevening hours.

5K Run registration fee: Adults $25, onsite $30 REGISTRATION

& ACTIVITIES

BEGIN AT 3PM


In August of 1990, the Family Support Coalition hosted thefirst meeting in the state of New Jersey to launch a cam-paign for legislation. It took several years of hard work, but

on March 29, 1993, the Family Support Act was signed into law.This law created a family support system that was meant to beflexible and responsive to the needs of families. The legislationwas enacted with the goal of supporting individuals with devel-opmental disabilities and their families. The act and adminis-trative code (N.J.A.C. 10:46A) set forth program guidelines forthe implementation and administration of a family supportsystem.The Family Support Act made the Division of Developmental

Disabilities responsible for creating a system of family supportthat is flexible, strengthens and supports families at home, andempowers families to meet their loved one's needs. The act sup-ports the underlying premise that families are the best judgesof what their individual needs are. The legislation states that programs should be accessible and

flexible, and families should define their own needs and selecttheir own services. The cash subsidy program allows familiesthe option to do this. This program is based upon the premisethat families know what they need and will provide it giventhat funds are available to them. Since the program’s spendingcriteria allows the funds to be utilized for any expenditure, theneed for receipts is negated.The Family Support law also created Regional Family Support

Planning Councils. The Councils make recommendations to aFamily Support Coordinator, under the direction of the New

Jersey Developmental Disabilities Council.As of January 2013, Family Support services (for example,

respite, camperships, assistive technology devices, and homeand vehicle modifications) for children under the age of 21 weremoved from the Division of Developmental Disabilities (DDD)to the Department of Children and Families (DCF).

Join us for our special Luncheon Celebration of the FamilySupport Act following Morning Break Out Sessions.

THE FAMILY SUPPORT ACTSUPPORT SYSTEM : HELPING NJ FAMILIES

The Family SupporT program includeS:

The Family SupporT program allowS FamilieS To:

• choose, control and monitor their own services

• exchange vouchers for services they choose

• receive cash subsidies to purchase services

• decide what services they need.

• Cash subsidies

• Communication and

interpreter services

• Counseling and crisis

intervention

• Day care

• Equipment and supplies

• Home and vehicle modi-

fications

• Homemaker assistance

• Medical and dental care

• Personal assistance ser-

vices

• Respite care

• Self-advocacy training

• Therapeutic or nursing

services

• Vouchers for services

NEVERLOOK BACK

CAREGIVER OUTLOOK

celebrating

25years

Upcoming Events

FRN IMPACT AWARDS

––––––––––– 2018 Honorees –––––––––––

Sponsorships Opportunities and Journal Ads AvailableVisit our website at

www.familyresourcenetwork.donordrive.com/eventFRNImpactContact Jacqui Moskowitz at 732-262-8020 ext. 220

The FRN Impact Awards aims to honor and appreciate the meritorious impact that its partners, supporters andstakeholders have had in advancing its mission to offer individuals and their families with continuing needs thegreatest opportunities, resources and services to support a full and happy life. FRN Impact Award Honoreeswill be recognized for their significant contributions in public service, health care, advocacy and patient access.

WHEN: NOVEMBER 8, 2018 @ 5:30 PM – 9:30 PMWHERE: PARK AVENUE CLUB, 184 PARK AVE, FLORHAM PARK, NJ 07932

CONTACT: JACQUI MOSKOWITZ • 732-262-8020www.familyresourcenetwork.org/event/frn-impact-awards

Robert D’AvanzoManaging Director, Accenture

Chairman of the FRN Board of TrusteesLeadership Impact Award

Marcelo E. Lancman, MDDirector of Northeast Regional

Epilepsy GroupHealth Professional of the Year Award

Eric M. JoiceCEO, The Family Resource Network

Visionary Award


WELCOMING REMARKS 9:15AM – 9:30AMDIAMOND BALLROOM

C. Grace Whiting, JDPresident & CEO, National Alliance for Caregiving

C. Grace Whiting, J.D., is the President and ChiefExecutive Officer at the National Alliance for Caregiving,where she continues her tenure after serving in variousroles, including Chief Operating Officer and the Directorof Strategic Partnerships. In addition to her work atthe Alliance, Ms. Whiting has served as the Advocacyand Communications Director at Leaders Engaged onAlzheimer’s Disease (LEAD Coalition), as the Directorof Strategic Initiatives & Communications, and as theSpecial Assistant to the Executive Director at theAlliance for Home Health Quality and Innovation inWashington, D.C. Named an “Outstanding Law Student”by the National Association of Women Lawyers, Ms.Whiting earned her law degree from the University ofMemphis School of Law and her undergraduate

degree with honors in Communication Studies fromLouisiana State University. She is currently a licensedattorney with the District of Columbia Bar and amember of the American Society on Aging and theAmerican Society of Association Executives.

KEYNOTE ADDRESS 9:30AM – 10:15AMDIAMOND BALLROOM


Sherri Snelling is founder/CEO of Caregiving Club, astrategic consulting, communications, connectionsand content company focused on supporting thenation’s 65 million family caregivers. She is the authorof A Cast of Caregivers-Celebrity Stories to Help YouPrepare to Care, and is a contributing columnist oncaregiving for PBS Next Avenue, Forbes.com,Huffington Post and USA Today. Ms. Snelling has

CONFERENCE PRESENTERSThe National Caregivers Conference is renowned for its national level speakers, workshops and exhibitors who address both individual and national issues facing thecaregiver community.



done work for AARP, Keck Medicine of USC,UnitedHealthcare, LifeCare, CareLinx, grandPad, FirstRepublic, Wells Fargo and QVC. She was the chairmanof the National Alliance for Caregiving and is current-ly a board member of the Alzheimer’s Association –Orange County chapter. She also serves as ambas-sador for the Caregiver Monday campaign and is anationally-sought speaker.

CALL TO ACTION PANEL 10:45AM – 12PM

SILVER HALL

Donna MeltzerCEO, National Association Of Councils OnDevelopmental Disabilities

Donna Meltzer is CEO of the National Association ofCouncils on Developmental Disabilities (NACDD), anational non-profit organization that supports thenation’s 56 governor-appointed DevelopmentalDisabilities Councils that work within state govern-ment to promote independence, productivity, and inte-gration of people with disabilities through systemschange activities. In this capacity, Ms. Meltzer over-sees the organization’s public policy and advocacyagenda, as well as technical assistance to the memberCouncils. She joined the NACDD in October 2012.Previously, she was the Senior Director ofGovernment Relations for the Epilepsy Foundation.She rejoined the Epilepsy Foundation in July 2005,after having previously worked for the Foundationfrom 1987-1993. She also served as Director ofLegislative Affairs for the Association of UniversityCenters on Disabilities (AUCD) from 1995-2005. Ms.Meltzer began her career on Capitol Hill working forthe Honorable Tony Coelho (D-CA), a formerCongressman who is the father of the Americans withDisabilities Act (ADA) and a person with epilepsy.Meltzer also spent two years as the GovernmentAffairs Director for the National Health Councilwhere she directed the advocacy agenda for theCouncil’s Voluntary Health Agency (VHA) members.

She is a graduate of the University of Maryland’sSchool of Journalism. She also participates in severalkey coalitions, including serving as President of theBoard of Directors of the Coalition for HealthFunding. She is a past Chair of the Consortium forCitizens with Disabilities (CCD) where she continuesas a co-chair of the CCD’s Fiscal Policy Task Force.


SILVER HALL

Connie Siskowski, RN, PhDPresident & Founder, American Association ofCaregiving Youth

Connie Siskowski, RN, PhD was educated at JohnsHopkins, Montclair State and New York University.She obtained her PhD in 2004 from Lynn University.She never expected her doctoral research to uncoverthe high prevalence of family health situations andconcomitant caregiving with detrimental academiceffects upon children in Palm Beach County. Herbroad background in healthcare and dedication todiminishing caregiver struggles led to the 1998 estab-lishment of a nonprofit organization which has trans-formed itself to become what is now the AmericanAssociation for Caregiving Youth (AACY), headquar-tered in Boca Raton, FL. Dr. Siskowski has contributedto multiple journal articles about youth caregivers aswell as a book, I’m a Teen Caregiver. Now What?Included among the several awards she has receivedare the lifetime Ashoka Fellowship, Purpose Prize,Distinguished Alumna Award from Johns HopkinsUniversity, Top Ten CNN Hero for 2012, the Listen,Learn and Care Award from the Office DepotFoundation and a star on Boca Raton’s Walk ofRecognition.



SILVER HALL

Crystal McDonaldAssociate State Director of Advocacy, AARP New Jersey

Crystal McDonald is the Associate State Director ofAdvocacy for AARP New Jersey where she helps toplan and execute campaigns to support family care-givers, improve health care access and affordability,promote retirement security and ensure access toaffordable utilities. Ms. McDonald brings over tenyears of experience in community organizing, healthpolicy, and coalition building. Prior to her role atAARP, she worked on health care policy and advocacyfor NJ Health Care Quality Institute, Faith in NewJersey, and NJ Citizen Action.

CAREGIVING IS BAD FOR YOUR HEALTH!LET'S GIVE THEM A BREAK! 10:45AM – 12PMSAPPHIRE HALL

Lois SheafferNational Director, REST

Lois Sheaffer has a passion for making a positive dif-ference in the lives of caregivers and RESTCompanions who discover the joy of connecting withcare receivers. Her experience spans more than 30years, working as a respite worker, program managerand worker trainer. Ms. Sheaffer is the author of theREST (Respite Education & Support Tools) program,an evidence-based respite-training program thatdelivers education and support to those offering abreak for caregivers. Since the early 1980s, she hasenjoyed a rewarding career with Marklund, whichserves individuals with profound developmental dis-

abilities. As the director of children’s services and,more recently, as director of government relationsand community support, Ms. Sheaffer has workedcollaboratively with state agencies and not-for-profitorganizations to expand the Lifespan Respite pro-gram in Illinois. She has conducted numerous work-shops for the Illinois Respite Coalition, Improvementthru Curriculum Awareness and Networking (ICAN),and Illinois Healthcare Association, ARCH, NY StateCaregiving and Respite Coalition.

USING TELEMEDICINE TO REDUCEEMERGENCY DEPARTMENT UTILIZATIONFOR IDD PATIENTS 10:45AM – 12PM

RUBY HALL

Matthew Kaufman, MD, FACEPCEO, Station MD

Dr. Matthew Kaufman received his medical degreefrom SUNY-Downstate College of Medicine and com-pleted his residency in emergency medicine at LongIsland Jewish Medical Center, Albert Einstein Collegeof Medicine, where he was chief resident. Since com-pleting his training, he has practiced and served as anadministrator in NYC area emergency departments.He is currently medical director of an emergencydepartment in the greater New York area. Prior topracticing emergency medicine, Dr. Kaufman under-went training in internal medicine and hematology-oncology. Before beginning his training in emergencymedicine, he was considered a key opinion leader inresearch and clinical practice treating chronic lym-phocytic leukemia. He has more than 40 publications,including a series of seven medical training books. Dr.Kaufman has board certifications in internal medi-cine, emergency medicine, hematology and oncology.In his spare time, he directs a disaster-preparednesstraining program in Latin America.

SKLifeScienceInc.com

Because there’s still work to be done

As long as there are unmet needs in CNS, we keep working. We explore the complex

mysteries of the brain to find answers for the healthcare providers, patients, and caregivers

forced to settle, because they’re worth it. We’re SK life science and we won’t rest.

© 2018 SK Life Science, Inc., a subsidiary of SK Biopharmaceuticals Co., Ltd. All rights reserved. PM-US-SKLSI-0015 12/17


MYPREF APP FOR CHILDRENWITH AUTISM 10:45AM – 12PM

GOLD HALL

Euric V. Guerrero, BCBA, MAAssistant Clinical Director, The COR Behavioral Group

Euric Guerrero is a licensed behavior analyst, board-cer-tified behavioral analyst (BCBA), and school psychologistand is currently the Assistant Clinical Director at TheCOR Behavioral Group. Having earned his MA in SchoolPsychology, he served as a school psychologist for manyyears, and while doing so earned his certification in behav-ior analysis. This enabled him to more effectively provideservices and develop his interest in working with peoplewith autism. Mr. Guerrero is currently licensed to providebehavior analysis services in New York, and is availablefor school consultation and behavioral training/consulta-tion with families. He currently provides BCBA supervi-sion on an individual/group basis, as well as clinical ser-vices to families in New York and New Jersey. Mr.Guerrero is involved in creating adaptive/inclusive fitnessand wellness opportunities for clients with intellectual,developmental, physical, and emotional disabilities. Mr.Guerrero is the Chief Creative Officer of KV Adaptive,which is dedicated to creating and prompting trainingand technologies to people with developmental disabilitiesand the caring individuals who provide support to them.

HEALTH CONNECTIONS PANEL 1:45PM – 3PM

GOLD HALL

Aviva WoogAdvocacy Manager, WellCare Health Plans New Jersey

Aviva Woog is Manager of CommUnity Connections, aCommUnity Impact program at WellCare Health Plans

of New Jersey. She is responsible for developing andimplementing partnerships focused on creating oppor-tunities to sustain the social safety net and invest incommunity programs that affect social determinants ofhealth and overall health outcomes of vulnerable pop-ulations throughout New Jersey. With over ten years’experience in government-sponsored managed careindustry that services vulnerable populations, Woog hasbeen committed to focusing on programming andadvocating, so the needs and services of the familycaregivers are included in the model of care that bene-fits the members served by WellCare. Before returningto WellCare, Ms. Woog held positions within CommunityRelations at Amerigroup Community Care, WellCare andHealthfirst NJ. During that time, she received awardsand honors from the YWCA of Essex and West Hudson,Mutual of America Foundation, Concerned BlackNurses Organization, Black Infant Mortality ReductionResource Center, and the March of Dimes. She has alsoparticipated in roundtable discussions on Caucus NJwith Steve Adubato, and on public programing forCablevision. She serves on the Board of Directors forthe Raritan Bay Area YMCA in Perth Amboy. She residesin West Orange, NJ with her son Joshua Barak Irvin.


GOLD HALL

Kyllian WarmanSpecialist, Fitness and Endurance Programs, St. JudeMemphis Marathon, ALSAC /St. Jude Children’sResearch Hospital

Kyllian Warman’s journey in his field began far beforeher first job offer. She began her career, working forCaregivers of New Jersey, where she advocated for the1.3 Million children in the U.S who can be seen as YouthCaregivers and served much-needed areas for familycaregiving leading Coalition Groups. Ms. Warman hasbeen recognized with numerous awards for her work –the AARP Portrait of Care, St. Jude Hero Among Us Award,and the Human Spirit Champion Award for outstand-ing service and extraordinary commitment to the bet-

terment of humanity. While chasing her academicobjectives as a student at the University of Memphis,she ran 17 marathons, raising funds for St. Jude Children’sResearch Hospital, became a part of the ACE TaskForce, joined Junior League of Memphis, and became amember of the Leadership Memphis class. Her com-mitment to making a change for people in need haspaved the way for her career. As the Specialist ofFitness and Endurance Programs for ALSAC / St JudeChildren’s Research Hospital, Ms. Warman is responsi-ble for developing and implementing strategy for theSt. Jude Heroes program, which produced the singlelargest one-day fundraising event for St. Jude, raising arecord breaking 10.3 Million Dollars, with over 25,000runners this past December in Memphis, TN.


GOLD HALL

Lisa Lewis, MBA, MPHCaregiver, Alzheimers Association

Lisa T. Lewis is a caregiver and wears several hats as aparent of three wonderful children, an active memberand officer of Alpha Kappa Alpha Sorority, Inc., a com-munity service organization and a mentor to youngprofessionals. Being a caregiver is daunting and can bestressful while also holding a fast-paced full-time jobwhere work-life balance is a challenge. Ms. Lewis volun-teers with the health advocacy team of the DelawareValley Chapter of Alzheimer’s Association where her focusis disease education and prevention. She has worked inthe healthcare industry for over 18 years and is currentlya sales and operations manager at a global pharmaceu-tical company. Ms. Lewis’ passion is healthcare education,specifically related to reducing health disparities. Herpassion is deeply rooted from personal tragedies of lovedone’s passing away from preventable diseases due tolack of knowledge, education and access to healthcare.Her presentation comments will focus on how to find“The Moments” and what you can do to maintain yourpersonal health and experience your moments to pre-vent or delay the onset of Alzheimer’s disease.

MOTIVATIONAL INTERVIEWING: A TOOL FORSUPPORTING HEALTH CHANGE 1:45PM – 3PM

RUBY HALL

Lazara Paz-GonzalezProgram Coordinator, Healthcare Quality StrategiesInc (HQSI)

Lazara Paz-Gonzalez currently works at HealthcareQuality Strategies Inc., the CMS-funded NJ QualityImprovement agency for Medicare services in NJ.There she coordinates efforts to support healthcareand clinical quality improvement initiatives forMedicare beneficiaries throughout the state. Herpast work experience has focused on administrativemanagement and program development at the feder-al, state and local level to support building stronginfrastructures and sustainable healthcare communi-ty models. She has additionally had the opportunityto provide nationwide strategic and technical adviso-ry for the development, recruitment, improvementand maintenance of health programs at community-based organizations.

ALTERNATIVE CONNECTIONS PANEL 1:45PM – 3PM

SILVER HALL

Thomas M. Chamberlain, PharmDFounder & CEO, EdLogics

Thomas M. Chamberlain, PharmD, Founder and CEOof EdLogics, an education-based consumer engage-ment company that provides innovative health edu-cation and learning management solutions toemployers, health plans, healthcare providers, andgovernment entities. With more than thirty years ofexperience designing innovative educational pro-



grams and population health initiatives for thehealthcare industry, Dr. Chamberlain brings a wealthof knowledge and insight to the design and develop-ment of highly effective consumer engagement andhealth literacy improvement solutions. Throughinteractive game-based learning, multimedia educa-tional programs, innovative gamification strategies,and rewards for educational achievement, EdLogics istransforming the way consumers learn about health.Prior to founding EdLogics, Dr. Chamberlain foundedand served as the CEO of several healthcare organiza-tions including the Center for Health Information,Managed Market Resources, The Benefit DesignInstitute, and The Center for Long Term CareResearch and Education. He received his Bachelor ofScience in Pharmacy from the University of RhodeIsland, and his Doctor of Pharmacy degree from theMedical University of South Carolina. He also com-pleted advanced clinical residency programs atThomas Jefferson University Hospital and TheMedical College of Virginia.


SILVER HALL

David S. DuplayFounder & CEO, Healtheo360

David Duplay is a business and technology strategistfor the pharmaceutical and healthcare industry.Specializing in healthcare marketing, communica-tions and technology, Mr. Duplay has worked withpharmaceutical companies, the medical profession,research organizations and patient groups for over 20years, completing various types of marketing andstrategy projects across almost all disease areas. Asan advocate for the healthcare industry and a pas-sionate believer that aligning the goals and aspira-tions of all stakeholders in healthcare is key toimproving outcomes for patients, Mr. Duplay is fre-quently invited to comment on the positive aspects ofworking with the pharmaceutical and managed careindustry and is a recognized author and speaker onhealthcare marketing strategies, physician, patient

and caregiver strategies, as well as the pharmaceuti-cal industries’ role in delivering quality care. In 2010,Mr. Duplay founded MedTera, a New York City-basedintegrated marketing solutions company focused onthe transformation of pharmaceutical, healthcareand life science marking. In 2003, he founded NewColony Partners. Prior to that, he served as generalmanager for three pharmaceutical marketing servicescompanies: Clark-O’Neill, Physician Desk Referenceand Phoenix Marketing Group. David is also thefounder of eHealthScience.com.


SILVER HALL

Paula MullerFounder, Sociavi Company

Paula Muller, Founder of Sociavi, has a lifelong pas-sion for technology applied to healthcare, startingwith her M.S. in Biomedical Engineering in Chileworking with blind people, then her work inSwitzerland analyzing EEGs to prevent epilepticattacks, followed by her Ph.D. and Post-doc work atRutgers with Parkinson patients, and most recentlyat Authentidate with Telehealth products and ser-vices. Ms. Muller has a vast experience in technologyand software development through her engineeringpositions at several companies like Sirus|XM satelliteradio, Net-Scale Technologies and Authentidate,among others, and she has extensive managementexperience through senior positions at Net-ScaleTechnologies and Authentidate. The business idea forSociavi evolved from her professional background aswell as her strong commitment to family relationsand lifetime connections. Thus SOCIAVI, comingfrom the latin word "share" and "unite", was bornwith the goal of keeping seniors and their familiescloser together.



Micheal Lozinski, M.A.T., ATPAssistive Technology Specialist, Advancing Opportunities

Michael Lozinski is an assistive technology specialistserving the central New Jersey and shore regions. Beforejoining Advancing Opportunities, he worked as a com-puter technology teacher for grades K-8. He holds aBachelor’s degree in Philosophy from The College of NewJersey and a Master’s degree in teaching from MonmouthUniversity. He is a Jaws Certified Specialist. At AdvancingOpportunities, he provides assistive technology evalua-tions and training to children and adults of all disabilities,so they can be successful in school, work and at home.


Garth Heid, ATPAssistant Director Of Assistive Technology Services,Advancing Opportunities

Garth Heid has over 30 years of experience, working inthe field of assistive technology and direct client services.He has provided services encompassing all aspects oftechnology designed for people with disabilities athome, school,and in the work place. Mr. Heid currentlyspecializes in providing home accessibility evaluationservices for a multitude of funders throughout NewJersey. Mr. Heid was one of the first AdvancingOpportunities (Cerebral Palsy of New Jersey) staff certi-fied as an Assistive Technology Professional (ATP) by theRehabilitation Engineering Society of North America.

Did you know?Epilepsy Services of New Jersey, an affiliate of The

Family Resource Network, is a state-wide, non-profitcharitable agency dedicated to helping to improve thequality of life for people affected by epilepsy and theirloved ones.Epilepsy is not a rare condition. At least 3.4 million

people in the United States live with seizures, including470,000 children. Epilepsy Services of New Jersey contin-ues to fight every day to improve the lives of residentsimpacted by epilepsy and their family caregivers.The Epilepsy Services of New Jersey will ensure that

people with seizures are able to participate in all lifeexperiences; and will prevent, control and cure epilepsythrough services, education, advocacy and research.We provide comprehensive support, personalized ser-

vices and advocacy for individuals and their families inorder to maximize their participation in society.

www.epilepsyservicesnj.org

An Affiliate of:

Did you know?The Family Support Center is a clearinghouse of up-to-

date information on a national, state and local family sup-port programs, services and disabilities. The Centeroffers a “One-Stop-Shopping” approach to individualsseeking information on disabilities and services by pro-viding them with easy access to a comprehensive array ofservices. FSCNJ responds to the needs of families whoare experiencing emotional distress and feelings of isola-tion, lack of information surrounding their child’s devel-opment and the services available to them.Family support is a flexible and varied network of sup-

ports that can change with individual family needs. Withmore than 50 programs and services available for NewJersey residents living with epilepsy, autism, develop-mental disabilities and chronic illness, FRN and its affili-ates have been affecting lives of thousands of familiesacross New Jersey since 1970.

www.fscnj.org

An Affiliate of:

We Work For Health New Jersey works to educate ourelected leaders, the news media and the communities theyserve about the important contributions biopharmaceuticalcompanies and their employees make to the health andeconomic security of individuals, local communities, andto the state of New Jersey. The state’s life science industrystands together with our business and communitypartners to educate elected leaders on public policyissues critical to our sector.

Do you know a patient with an inspiring story?Contact us about nominating him/her for the MayorsCommittee on Life Sciences Patient Courage Award.Contact Terri O’Connell at [email protected] more information.

Interested in joining our coalition?Sign up at: www.weworkforhealth.org

NEW JERSEY


––––––– 2018 –––––––

EP GUIDENAVIGATING SPECIALNEEDS RESOURCES

While everything in the world seemsto be moving too fast, one term

comes to mind:

BY ADEOLA SONAIKE, PHD, MPH, CHES

© EP MAGAZINE; REPRINTED WITH PERMISSION FROM THE 2018 EP GUIDE

CAREGIVER OUTLOOK


theRe aRe steps to assist you with selecting alocal Respite pRovideR that meets youR family’s needs.

Respite is youR time as a caRegiveR foR self-caRe,youR time to Respect youRself and youR Role as a caRegiveR

SEVEN STEPS TO ASSIST YOU WITH SELECTING A LOCAL RESPITE PROVIDER:

1.deTermine how much

reSpiTe you need. A great

tool for this is the ‘Caregiver Self-

Assessment Questionnaire’

which was developed by the

American Medical Association

2.have a diScuSSion wiTh

your loved one, your care

team and additional family mem-

bers to jointly identify the type

of respite care that will best suit

your loved one:

a. In-home respite models

include; home-based respite,

sitter companion respite,

and consumer directed

respite

b. Out-of-home respite models

include; host-family respite,

respite-center based care,

respite in foster or group

homes, parent/family care-

giver cooperative respite,

hotel respite (respitality),

hospital-based respite, camp

respite, and adult day center

respite

3.idenTiFy and conTacT your

STaTe liFeSpan reSpiTe

program or State Respite

Coalition. The ARCH National

Respite Network has a compre-

hensive State Respite Registry

4.deTermine a SuiTable paymenT

model for respite care by contacting your

State Lifespan Respite Program or State

Respite Coalition. Multiple payment models

may exist in your state for respite includ-

ing:

a. Medicaid Waiver

b. Medicaid State Health Insurance Plan

c. Medicare Hospice Benefit

d. Area Agency on Aging (AAA)

e. State funding through Family

Caregiver Support Programs

f. Veterans’ Health Administration

g. TRICARE's Extended Care Health

Option (ECHO) or the Military

Exceptional Family Member Program

(EFMP)

h. Long Term Care Insurance

5.chooSe/hire a reSpiTe provider.

Contact your State Lifespan Respite

Program or State Respite

Coalition to determine the

training and licensing require-

ments for respite providers.

There are two options for

selecting your respite

provider:

a. Hiring a respite

provider on your own

b. Matching with an

agency to hire and

train a respite

provider for you

6.prepare your loved one For

reSpiTe. Consider scheduling an ori-

entation and initial supervised ses-

sions with your respite provider so

that your loved one may familiarize

themselves with a new provider

7. plan To make The moST oF

your reSpiTe. When was the last

time you as a caregiver went to see

your (not your loved ones) physician

for a Wellness Visit? We’ve all experi-

enced those times when before we

know it, two to three years have

passed and we haven’t completed an

annual physical.

Taking a healthy respite presents a

great opportunity for you

to put your health and

wellness first for a

change so that

you may con-

tinue to pro-

vide care

and sup-

port for

your

loved

one.

Respite, which originates from the Latin word ‘respectus’,literally means consideration, the act of looking back (oroften) at oneself. It is also no coincidence that ‘respec-

tus’ is the Latin origin for the term, respect. For some, the ideaof looking back with consideration and taking respite may notrequire any particular effort. To the 39.8 million family care-givers in the US, however, respite has become a lifeline. Anopportunity for reflection and rest, respite services are avail-able to the caregivers of individuals with support needs acrossthe lifespan. This short-term break, which can either beplanned or on an emergency basis, allows family caregivers totake intermittent breaks from their caregiving responsibilities.Respite can be provided in a variety of settings, including butnot limited to: one’s own home, the home of a respite provider,a group home, a supervised apartment, day care centers, adultday programs, and camps.

The idea of having to search for respite providers may soundlike a daunting task, however, including respite care into yourfamilies’ schedule can actually restore stability within yourhome. Caregivers often report returning to their caregivingresponsibilities renewed and with a new pep in their step as aresult of just a couple of hours of respite per week. “I feel closerto my son… because I have time to do my own thing and it helpsme refill my cup with patience,” says a family caregiver. Respitecare tends to be much more effective when combined withother services and supports, and is recommended during allforms of person-centered planning.Trained respite providers deliver professional, safe, respect-

ful and culturally competent care that continuously assessesand effectively responds to the needs of your loved one in aperson-centered and empowering manner. Each state main-tains a diverse pool of respite providers who have the skillset to

meet the needs of the families. Irrespective of this, each familyretains the right to select, hire and train their own preferredrespite provider.

For some, healthy respite may include an hour of medita-tion and self-reflection. In an age where the practice ofMindfulness is recognized as a key tool to help people

reduce anxiety, enjoy life in the moment, discover genuine joy,and to generally be present in mind, body, and spirit; it shouldcome as no surprise why services such as respite care are so crit-ical for caregivers today. Mindfulness teaches us to be present inthe moment and self-aware. Acknowledging and accepting theroles we play in the livesof our loved ones, mind-fulness teaches us to beaware of the impact thatour presence or absenceof self-awareness canhave on those around usand on the daily choiceswe make. Respite createsa space in time where thequest for self-awarenessas a caregiver is accept-able and encouraged. Ninety-four percent of

family caregivers havefound respite to be ahelpful resource, report-ing improved physicalhealth, improved emo-tional health andreduced stress whenthey have access torespite. During respite,you may find yourselfgetting some much-needed rest and relax-ation, caring for personalneeds, running errands,or engaging in socialactivities for enjoyment and enrichment. Respite is your time asa caregiver to put yourself first. Family caregiver: “The respiteprovides us with the relief not to get burned out, so that we cancontinue to care for (our loved one) in our home where we wouldlike him to be.”People are generally living longer lives, and the rates of

seniors with multiple chronic conditions, disabilities and/ormental health conditions are continuing to rise. Today, morepeople than ever before are providing 24/7 direct care and sup-port to a loved one. In many instances, an individual may findthemselves playing the role of a caregiver during multiple phasesof their lives, an example of this is becoming a caregiver for a par-entwho is part of the baby boomer generation, and then later inlife becoming a caregiver for an aging spouse, a family memberwho is a veteran, or a child/grandchild who has a special need.This dramatic rise in the number of unpaid family caregivers

nationwide has prompted an increased recognition among pol-

icymakers (many of whom are very familiar with the daily rolesof a caregiver) of the need for services and supports for care-givers. In September, the Senate passed the bipartisanRecognize, Assist, Include, Support, and Engage (RAISE) FamilyCaregivers Act of 2017 (S.1028/HR.3759). The RAISE Act wouldrequire the Secretary of Health and Human Services to devel-op, maintain and update a national strategy to recognize andsupport family caregivers. The Act which will also encouragepublic input and participation, is now awaiting passagethrough the House of Representatives.Similar activities have occurred at the state level, as the New

Jersey Caregiver Taskforce Bill (NJ S2877/ A1463) which aims toevaluate caregiver support services in the State and provide rec-ommendations for the improvement and expansion of such ser-vices, sailed through the Senate in June and is awaiting passagethrough the Assembly. The ultimate goal of each of these poli-cies is to ensure that family caregivers are effectively supportedin their critical role in the livelihood of a loved one. On October11, 2018, The Family Resource Network will be putting such idealsto action by inviting health providers, innovators, and familycaregivers to the National Caregivers Conference in Iselin, NewJersey. This conference creates a platform for you, the familycaregiver, to speak directly to innovators in the health and tech-nology fields as we work together to find solutions to the dailychallenges faced by you and your loved ones. History has shownus that the continued commitment to the plight of all caregiverscan truly result in the transformation of how we envision care.In 2006, Congress passed the Lifespan Respite Care Act whichestablished coordinated systems of accessible, community-based respite care services for family caregivers of children andadults of all ages with special needs. These systems and supportservices are now accessed by millions of caregivers nationwidewho recognize the importance of respite.Respite is your time as a caregiver for self-care, your time to

respect yourself and your role as a caregiver, your time to placeyour physical and emotional well-being first, your time for restand, most important, it’s your time to reclaim. When you takethe time to reconnect with self, you will find that the transfor-mation in your energy signature will result in a greater sense ofpeace, compassion, empathy and love in action for you and yourloved one.•

ABOUT THE AUTHOR:

Adeola Sonaike, PhD, MPH, CHES is the Senior Vice President of Health at The

Family Resource Network, where she works to advance the health of people

with special needs, chronic conditions, and family caregivers. Dr. Sonaike

attended Rutgers University where she attained a Bachelor's in Biology, and

Walden University where she attained a Master's in Public Health and a PhD in

Public Health- Epidemiology. Dr. Sonaike is also a Robert Wood Johnson

Foundation Culture of Health Leader.

The Family Resource Network (FRN) is a comprehensive, family-focused, orga-

nization designed to meet the growing need for community based programs

and services for individuals and their families with continuing needs. For

almost 50 years, FRN has helped thousands of New Jersey families with a vari-

ety of disabilities and chronic conditions connect with resources and support

services they need to live full and happy lives. FRN’s network agencies are:

Autism Family Services of NJ, Caregivers of NJ, Epilepsy Foundation of NJ and

the Family Support Center of NJ. Please visit www.familyresourcenetwork.org

for more information or call (800) 376-2345.

For more information on EP Magazine, visit www.ep-magazine.com


Respite is youRtime to place

youR physical andemotional well-being fiRst, youR

time foR Rest and,most impoRtant,it’s youR time to

Reclaim.

UCB is committed to advancing research to improve the lives of people living with epilepsy and finding solutions to help patients live at their ideal.

Connecting with patients

To learn more, visit

www.ucb-usa.comwww.EpilepsyAdvocate.com© 2018 UCB, Inc. All rights reserved.

Catherine, living with epilepsy

AFTERNOON PANEL 3:45PM – 5PM • DIAMOND BALLROOM

Innovation is everywhere! The National CaregiversConference is inviting innovators, inventors,researchers and thought leaders to share their newideas, products, technologies, or therapeutic conceptsthat aim to transform the health and role of familycaregivers. We are aware that innovators throughoutthe world are developing new programs and productsthat aim to empower and positively impact activitiesof daily living for people with the greatest healthneeds and their loved ones who care for them. The

Caregivers Shark Tank will present a platform toshare these ideas with the Sharks who have the capac-ity to bring new models to the forefront of caregivingpractice.Caregivers Shark Tank finalists will be invited to pre-sent their new ideas, products, technologies, or thera-peutic concepts during the Afternoon Panel onOctober 11, 2018 in front of the panel of judges(Sharks), venture capitalists, leading industryinvestors, healthcare providers and caregivers.

CAREGIVER SHARK TANKCalling all innovators! The National Caregivers Conference has invited inventors,innovators, and researchers to showcase their transformative ideas, products and concepts.



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