What to expect When you are expecting a BaBy With DoWn SynDromePrograms and Services available at Surrey Place Centre and Planning for the Future

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Table of ContentsAbout Surrey Place Centre 4

What to Expect 7

Dealing with the Diagnosis 8

Services and Supports available at Surrey Place Centre for Babies, Children, and Youth, and their Families 13

Infancy and Early Childhood Program (Age 0 – 6) 14

Children and Youth Program (Age 6 - 18) 17

PlAnnIng For ThE FuTurEAdult Program 22

PlAnnIng For ThE FuTurEDSo Toronto region 25

About Surrey Place CentreSurrey Place Centre provides specialized clinical services that are responsive to individual need and promote health and well-being in the Toronto region.

We help children and adults living with developmental disabilities, autism spectrum disorder and visual impairments reach their full potential. We offer a variety of groups and workshops for clients, families and caregivers, as well as extensive education and consultation services to community agencies.

Our comprehensive programs and services range from assessment, diagnosis, and one-on-one treatment, to family counselling and group support, and it is all provided by a broad network of clinicians and professionals.

Services at Surrey Place CentreClients may receive any combination of the following treatment services:

» Applied Behaviour Analysis

» Early Childhood Vision Consultations

» Audiology » Behaviour Therapy » Counselling » Developmental Therapy » Intensive Behavioural

Intervention

» Medicine » Nursing » Occupational Therapy » Parent Training » Psychology » Service Coordination » Speech Language

Pathology

Clinical Programs » Adult Program » Augmentative

Communication and Writing Aids Program

» Blind-Low Vision Program

» Children and Youth Program

» Infancy and Early Childhood Program

» Toronto Partnership for Autism Services

» Toronto Autism ABA Services

» School Support Program4

Community Programs » Developmental Services Ontario Toronto Region » Community Network of Specialized Care » Toronto Network of Specialized Care » MMW-Videconferencing Program

Access and Referrals At Surrey Place Centre, we want to make it easy for people to access our services. Anyone may refer an individual to Surrey Place Centre for assessment or treatment services. This includes:

» An individual who has or may have a developmental disability

» Family Members » Caregivers or Guardians

» Physicians and other Health Care Providers

» School Board Members » Workers at other

Community Agencies

You must call us to be assessed for a developmental disability. If you have been previously diagnosed with a developmental disability, a call will be required to gain access to our specialized groups and services. Please call 416-925-5141.

Surrey Place Centre is affiliated with the University of Toronto and other academic institutions, and is a teaching site for students in a variety of health care professions. Surrey Place is accredited with Accreditation Canada with Exemplary Standing.

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What to ExpectAll persons born with Down syndrome will have some degree of intellectual delay and also some physical features that are part of the syndrome. But, as with all children, no two children with Down syndrome are alike. Each will be unique and each will be affected in these areas in varying degrees.

There will likely be a number of medical professionals involved in your child’s life and some medical testing and screenings may be recommended at some point for your child when they are young and as they age. It is important to follow your baby’s doctor’s advice to ensure optimum health.

Create an information binder that can be used to keep all the important information about your baby that you will need. This can include the names and phone numbers of doctors, clinics, people and agencies who will be involved with your child. Keep a list of appointments, any assessments or reports in this binder as well.

Finally, if you are feeling overwhelmed or just in need of support considers counseling services. Counseling services for expecting parents and for parents of a baby with Down syndrome can assist parents looking for guidance in dealing with the diagnosis, how to talk to family and friends, information about the condition, and what to expect from services. For more information call 416-925-5141 or visit www.surreyplace.on.ca

Raising children is never simple! Getting the help you need is the first step to get adjusted to your new baby and becoming parents. Most families make good use of the services which are available to them and continue on a positive path of happy family life.

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Dealing with the DiagnosisIf you have been told that you will be having a baby who will have Down syndrome you will likely be feeling confused, overwhelmed and afraid. It is likely you will be in denial of this information for a period. It is important that you allow yourself time to feel these emotions and to process the feelings of disbelief, anger, and often grief you may have. These are natural feelings and ones which will help you to begin to move towards acceptance.

Get the Emotional Support and Help you need: Tell all your family and friends or just tell a couple of people. It is up to you. When you do tell them you just need to let them know that your baby has Down syndrome. If you don’t want to talk about it, tell them. If you do, go ahead. You decide. But let them be a source of strength and support.

Some parents may want to consider attending a Prenatal Parent Counseling Service that can provide supportive specialized counseling for pregnant parents who have learned that their baby will be born with Down syndrome.

You may want to join a support group and one of the many Down syndrome Associations / Society’s (see links below). These provide you with opportunity to learn, laugh, share, gain and provide support with other parents of children with Down syndrome. » Canadian Down Syndrome Society - www.cdss.ca

» Down syndrome Association of ontario - www.dsao.ca » Down Syndrome Association of Toronto - www.dsat.ca » Circle 21 - circle21.com » national Down Syndrome Congress - www.ndsccenter.org

Get the Information you Need:You will probably go home and have many questions you need to have answered. You should speak with your doctor or clinic.

It is important to ask questions of the medical professionals 8

who are giving you this information if anything is unclear or confusing. You may want to write down your questions so that you can ask them at a later time.

It is likely that you were provided with some information about Down syndrome and some lists of services and resources available to families. Support Groups and Associations as listed above provide many great books and articles that will help you learn about your baby.

Find Out about the Types of Financial Supports Available:There are some financial help available to families’ who have a child born with Down syndrome. The amount your child receives sometimes depends on a number of factors such as your income and/or your child’s needs. These include Assistance for Children with Severe Disabilities (ACSD), Special Services at Home (SSAH), and the Disability Tax Credit (DTC). www oeyc edu gov on ca

Additionally information about the Register Disability Saving Plan (RDSP) is available at the Government of Ontario website www cra gc ca/disability

Others include the Easter Seals Incontinence Supplies Grant Program, and Charitable Foundations, President’s Choice® Children’s Charity (PCCC) and Jennifer Ashleigh Charity.

Find Out What Services will be Available for your Baby:When you child is born, the hospital will refer you to an agency such as Surrey Place Centre. An Intake/Service Coordinator will begin the process and facilitate additional referrals as needed. They will also help you understand the services and supports available for infants, children and adults with Down syndrome.

You will want to ask the doctor or the pediatric nurse for the name of a Paediatrician for your baby. Also ask for a list of the medical appointments that will need to be booked.

While you are waiting for your baby to be born, you may want to visit the following websites: 10

» www mothercraft ca - CITYKIDS is a network of agencies offering single point access, coordinated intake and service delivery to children with special needs and their families. Phone: 416-920-6543.

» www healthykidstoronto ca The Toronto Early Childhood and Family Resource System: Pathway and Resource Listing, a tool that helps link families to appropriate community services and programs that promote development, reduce risks, and address developmental concerns.

» www tpsls on ca - Toronto Preschool Speech and Language Services and the Infant Hearing Program

» www oeyc edu gov on ca - Ontario Early Years Centre (OEYC) is a place for children up to the age of six and their parents and caregivers to take part in programs and activities together. Parents and caregivers can also get information about their children’s development and about services to support that development. The programs and services are free to all parents and caregivers of young children.

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Services and Supports available for Babies, Children, and Youth, and their FamiliesSurrey Place Centre has a wide variety of supports and services for you and your child. This can include counseling for you and/or your partner prior to the birth of your baby as well as other services that aid you in promoting your child’s development from the early years, childhood and adolescence, to adulthood and aging. Each of the three age based programs provide specialized clinical services to address specific issues and identified goals, build capacity and provide tools and supports to clients, families and/or care providers.

A baby born with Down syndrome would be referred to Surrey Place Centre while still in the hospital by a pediatric nurse. The nurse will contact the Intake Coordinator at Surrey Place Centre to notify us the day the baby is discharged from the hospital.

The family will be contacted to complete the Intake Needs Assessment. Babies with Down syndrome are seen as a priority in the community and at Surrey Place Centre.

The Intake process can be completed over the phone with the family, and the hospital can forward the information with the family’s consent. At times the Intake process can be completed in the family home. We make it easy for families to receive the services and supports necessary to ensure their child has the best possible start.

A Service Coordinator can help the family connect to other agencies, support with daycare, subsidy, preschool, school and community programs, and respite services. They can also educate the family on services and supports available for infants, children and adults with special needs and help with applications for funding.

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Infancy and Early Childhood Program (Age 0 – 6)Your baby may reach growth and development milestones later than other children. These milestones may include rolling over, sitting, standing, walking, and talking. Encouraging communication and developmental skills are key at an early age as is ensuring that any hearing loss is discovered and addressed.

Parents and other family members such as siblings may benefit from supportive counselling or groups that can help them deal with their issues or concerns as they support their family member who has Down syndrome. Additionally, obtaining information and getting connected to the right specialized services, financial supports, community services, and support groups is important.

As your child gets older, some challenging behaviours may emerge and interfere with community and family life. These can sometimes be related to adapting to schools settings, having to interact with peers, or not being able to express what they want or how they feel. Sometimes these can be related to health issues. The following services are ones that most frequently meet the needs of this age group:

» Intake - ServIce coordInatIon ServIceS: provide comprehensive intake and service coordination as required. Service may include assessment of needs, or internal and external referrals to specialized services and resources such as recreation, respite and funding.

» the Infant development program (Idp): provides home based, family centered programming support to facilitate development, as well as parent education and community information. Services may be provided by either a Developmental Therapist or an Occupational Therapist, based upon your child’s needs.

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15 » toronto preSchool Speech and language ServIceS (tpSlS): offers Speech-Language assessments, consultations, group based sessions, parenting support, and therapy to ensure that children achieve their optimal communication development.

» occupatIonal therapy ServIceS: assess performance of motor, sensory motor, cognitive, and social skills and provides short and long term intervention as well as consultation services by way of a mediator training model. They work with a child and their family to adapt the environment, build on the child’s foundation skills, and as well as remediate specific skills, all in order to maximize occupational performance, developmental functioning and independence.

» audIologIcal aSSeSSment ServIceS: provides diagnostic hearing tests and intervention. Children with Down syndrome will often be scheduled for a yearly assessment due to the increased prevalence of hearing loss. Children with Down syndrome are often more likely to have congestion in the ears that needs regular monitoring. Depending on the child’s age this may mean hearing assessments are needed every 6-months to 1-year.

You may also wish to attend one of our groups including: » the parent & chIld SocIal / SkIll development

muSIcal mornIng: provides information, socializing, music and movement for infants and children from birth to 2.11 years and their caregivers.

You, your partner, or another family member may benefit from: » prenatal parent counSelIng ServIce: provides

supportive specialized counseling for pregnant parents who have learned that their baby will be born with Down syndrome.

» famIly counSellIng: is a family based intervention that aims to support and strengthen family systems. If your child with Down syndrome has an older sibling, they may wish to attend:

» the SIblIng Support group: which is an 8-week program just for brothers and sisters of children with developmental disabilities.

As you child becomes a little older, they may be a need for the following services: » behavIour therapy ServIceS: helps parents and/or

caregivers with children who have identified behavioural challenges. These behaviours may be harmful to the child or others, are interfering with learning or performing skills already learned, or disruptive to the child’s home, school or care environments. Following an assessment, a behaviour plan is created and parent training is provided with the goal of enabling care-givers to teach functional behaviour alternatives to the child and reduce problem behaviours.

» pSychologIcal aSSeSSment ServIceS: children with Down syndrome may require a psychological assessment. Sometimes this is considered to help the active clinicians better understand the child’s need and strengths, to address some question regarding the validity of an existing assessment. It may also be needed to enable to family to access funding or resources in the community. In addition, an assessment may be helpful before a child is going to start school.

Additionally, your child may benefit from some medical supports such as: » nurSIng ServIceS: provides clinical consultation to

families regarding health concerns, health promotion and education in areas such as growth and nutrition, sleep concerns, toileting, medications and other complex and significant developmental, health and or social issues.

The clinicians who are working with you and your child may discuss the option of accessing other medical services to assist them in their work. This might include Developmental Paediatrics, Psychiatry and Neurology.

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17Children and Youth Program (Age 6 - 18)In this age group, health problems and developmental disabilities can lead to behavior problems. For example, a child may develop behaviours that are highly and persistently defiant, in part because he or she does not communicate well or understand others’ expectations.

A hearing loss may also be an issue that needs to be addressed, and services that support the child’s ability to communicate with others is an area of need during these years.

Transition planning is an area that is also very important at this time. It can be helpful to gain more information about how to access adult services and what options are available.

Puberty starts at about the same age for adolescent youth and Down syndrome youth. Many encounter confusions when dealing with multiple physical changes that occur around this time. Parents often worry about rapid weight gain during the time of puberty and how this could impact their children’s pre-existing health issues, such as heart or thyroid problems. They may face social difficulties and vulnerabilities such as abuse, injury, and other types of harm. They may also have a hard time handling strong emotions and feelings. Sometimes these struggles can lead to mental health problems, especially depression. The following services are frequently utilized for this age group:

» behavIour therapy ServIceS: offer evidence-based assessment, intervention and consultation services to decrease concerning or inappropriate behaviours and to increase positive alternative behaviours and skills. Parents or caregivers participate in training and joint goal setting to enable continued success after service ends.

» audIologIcal aSSeSSment ServIceS: provides diagnostic hearing tests and intervention. Children with Down syndrome will often be scheduled for a yearly assessment due to the increased prevalence of hearing loss.

19 » Speech-language ServIceS: identify and assess the communication, oral motor and swallowing skills and provides training so parents or caregivers can effectively carry out recommendations and strategies at home. Based upon the assessment a referral may also be made to The Augmentative Communication & Writing Aids Program (ACWA): a specialized Augmentative and Alternative Communication clinic that includes both face-to-face and written communication. The ACWA clinic conducts communication assessments to enable functional communication through a speech generating device and/or a writing aid.

» occupatIonal therapy ServIceS: identify and assess fine and gross motor skills, sensory processing difficulties and independent living skills. Mediator -based education is provided to parents and caregivers so that joint goals can be set, and parents can effectively carry out recommendations and strategies at home.

» IndIvIdual counSelIng ServIceS: support individuals who are experiencing challenges in daily living. The focus of intervention is on helping the individual cope more effectively with daily pressures of life including managing challenging relationships by providing support around anger and stress management, self-esteem, as well as depression. In addition, support may be provided to those who are struggling with the impact of past or current trauma (sexual or physical abuse), bullying, or bereavement.

» ServIce coordInatIon ServIceS: assists parents with the coordination of and referrals to services for their child who require multiple supports and services. A service coordinator provides information on the developmental “system” to enable a parent to navigate through it. Through advocacy and hands on practice service coordinators teach families how to access services in the system as well as access all funding sources, respite programs and medical services. This enables full participation of their child in community supports while building caregiver capacity.

» pSychologIcal aSSeSSment ServIceS: children and youth with Down syndrome may require a psychological

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assessment. This may include assessment of the child or youth’s overall psychological profile that includes an evaluation of his/her cognitive, academic, adaptive and/or social emotional skill development. This is often done to clarify a child’s current level and pattern of functioning across a range of domains for the purpose of service planning and treatment recommendations. They may receive a brief screening of cognitive and adaptive skill functioning to determine eligibility for services and funding.

In addition, your child may benefit from some medical supports such as: » nurSIng ServIceS: may include providing assessments

or consultations which may include a holistic health history, appropriate screening of specific areas of identified or suspected health or lifestyle concerns. Services may included assessment and support for the management of episodic and stable chronic conditions commonly seen in primary health care, consulting with physicians or directing to appropriate medical practitioner as required. The clinicians may discuss the option of accessing other medical services to assist them in their work. This might include Developmental Paediatrics, Psychiatry or Neurology.

» the behavIoural medIcal aSSeSSment of complex kIdS and theIr envIronment (bmacke) clInIc: provides comprehensive, inter-disciplinary healthcare assessment and clinical consultation to children to assist with complex developmental behavioural conditions, and/or compounding internal medical issues.

You, your partner, or another family member may benefit from: » famIly counSelIng ServIceS: support families of

individuals with Down syndrome who are experiencing stress related to living with and caring for a child with this developmental disorder. Family members of a child with Down syndrome are often under a great deal of stress since the care needs of the affected child can be challenging. SPC offers services to those family members who are in need of additional emotional support in the form of parent

21counselling, sibling counselling or counselling for families as a whole.

» the SIblIng Support group: which is an 8-week program just for brothers and sisters of children with developmental disabilities

You may also wish to attend one of our groups including: » the behavIour management parent group:

helps parents of school-age children to learn basic behaviour management strategies that can be used in the home and the community. Behaviour therapists teach parents the skills, techniques and strategies they need to manage, cope with and modify their child’s behaviour.

As your child begins to move towards adulthood, you may want to found out more information about accessing adult services. Please visit the Developmental Services Ontario Toronto Region (DSO TR) website at www.dsotoronto.ca or phone 416-925-4930.

For more information about Surrey Place Centre and the services offered please call 416-925-5141 during the following office hours: » Monday, Friday:

8:30 AM to 5:00 PM » Tuesday, Wednesday, Thursday: 8:30 AM to 8:30 PM

Or visit our website: » www.surreyplace.on.ca

PlAnnIng For ThE FuTurE

Adult ProgramThe Adult Program at Surrey Place Centre provides assessment, treatment, consultation and support to people 18 years of age and over who have a developmental disability.

The program also supports their families, caregivers and other service providers. Our goals are to help clients to manage the challenges of daily living, promote their independence and enhance the overall quality of their lives.

The Adult Program offers a unique set of programs to adult clients, including interdisciplinary assessment, treatment, primary health care, mental health services and parenting support.

Surrey Place Centre’s interdisciplinary team provides a variety of services including audiology, behaviour therapy, counselling, family medicine, nursing, occupational therapy, parent training, psychology, service coordination and speech language pathology.

The following services are frequently utilized for this age group:

» A Psychological assessment should be booked in order to obtain a baseline for adults with Down syndrome after they finish school and/or after the age of 21. Note, the best practice is to do the testing between 21 and 25 years of age; sometimes baseline testing can also be completed earlier if there are additional needs such as a Developmental Services Ontario assessment.

» An audiology assessment should be booked for adult clients with Down syndrome as they have a high incidence of hearing loss. At Surrey Place Centre audiology assessments are booked every 2 years for Down syndrome clients with no history of hearing loss and every year for those clients with a diagnosed hearing loss. Should the client have ongoing middle ear problems, audiological evaluation and monitoring may be required more frequently, such as every 3-6 months.22

We also provide education and training through workshop and student placements.

Contact UsTo contact or refer a client to the Adult Program at Surrey Place Centre, please call 416-925-5141 and ask to speak to the Adult Program Intake Service Coordinator.

If you have not used any clinical services in the past, please contact Developmental Services Ontario Toronto Region (DSO TR) at 1-855-DS-ADULT (1-855-372-3858) or 416-925-4930 to determine eligibility for services in the developmental sector. Once eligibility is determined, DSO TR will forward your request onto the Adult Program in Surrey Place Centre.

25PlAnnIng For ThE FuTurE

DSo Toronto regionDSO Toronto Region Will: » provide information about available services and supports; » confirm eligibility for those applying for Ministry funded

adult developmental services and supports for the first time;

» complete the new Application Package to assess each individual’s service and support needs; and

» link eligible people to available services and supports.

You Should Call DSO Toronto Region If You Are: » An individual, currently 18 years or older (or as young as 16

years of age) » An individual with a developmental disability: » Significant limitation in cognitive functioning » Significant limitation in adaptive functioning » History of these limitations prior to age 18 » A new applicant for services and supports in the Adult

Developmental Sector » A resident of Toronto (downtown Toronto, Scarborough,

North York and Etobicoke)

How to Apply For Services And Supports: Please contact DSO Toronto Region staff who will: » confirm your eligibility to receive services and supports; » support you in filling out an Application Package; » create a support plan for you; and » help you connect to available services and supports.

When Applying For Services and Supports You Will Be Asked For: » Proof of Address » Birth Certificate » Psychological Report

Contact Information For DSO Toronto Region: 2 Surrey Place, Toronto, Ontario M5S 2C2 1-855-DS-ADULT (1-855-372-3858) or 416-925-4930 TTY: 416-925-0295 • Fax: 416-925-3402 Email: dsotr@surreyplace.on.ca

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