Down Syndrome Support at Home — All Ages

Care by condition

People with Down syndrome are living longer than at any point in history, and the support question has changed with it. Increasingly the issue is not childhood at all — it is adults in their forties and fifties, often still living with parents who are themselves getting older, and sometimes facing early dementia.

Support should be built around what the person can do, which is usually more than services assume.

What actually matters

• Independence is the goal, and it is easily eroded. Doing things for an adult who could do them with prompting reduces what they can do within months.
• Health needs are specific. Thyroid problems, hearing and vision changes, sleep apnoea and heart conditions are all more common, and are frequently missed because symptoms get attributed to Down syndrome itself.
• Alzheimer’s disease occurs earlier in people with Down syndrome, sometimes from the forties, and the early signs are often changes in skills or personality rather than obvious memory loss.
• Aging parents are the quiet crisis. Many adults with Down syndrome are supported by parents in their seventies and eighties with no plan for what comes next.
• People understand more than they can express, and being talked about rather than to is a daily experience worth ending.

How we help

• Support that prompts and encourages rather than takes over, so skills are kept rather than lost
• Help with routine, personal care and household tasks at whatever level the person actually needs
• Support to get to work, day programs, activities and social life
• Attention to the health conditions that get missed, and reporting changes that deserve a doctor’s look
• Support where dementia has begun, working alongside our dementia care team and adapting as it progresses
• Help for households where aging parents are still the main carers, including planning ahead rather than waiting for a crisis
• Support for children and young people at home, after school and in the holidays
• Respite that is regular and predictable rather than emergency-only

Who provides the care

Personal support workers provide this care. Nursing is placed where a plan requires it. Where dementia develops, the same approach we use on our dementia and Alzheimer’s page applies, adapted for someone who has had a lifelong disability — which is a genuinely different thing and needs carers who understand the difference.

Common questions

My daughter is forty-two and I am seventy-eight. What happens when I cannot do this?

This is the most important question families ask us and the one most often left too late. Building in regular support now — while you are still there to introduce it — makes a transition far less traumatic than an emergency handover. Developmental Services Ontario is also the place to begin on longer-term housing and funding.

She has changed and I am worried it is dementia.

Worth taking seriously and worth investigating properly. Alzheimer’s disease does occur earlier in people with Down syndrome, but so do thyroid problems, hearing loss, depression and sleep apnoea — all treatable and all easily mistaken for dementia. Ask for a proper assessment rather than assuming.

Will your carer talk to him or about him?

To him. That is what we brief for, and it is a fair thing to hold us to.

Do you support children?

Yes, at home, after school and during holidays, working alongside the family and any therapy team already involved.

What funding is available?

For adults, Passport funding through Developmental Services Ontario, and Ontario Health atHome for personal support and nursing. For children, Special Services at Home. The Ontario Disability Support Program is separate again. Ask about all of them before paying privately.

Where we provide this care

We provide this support across communities across Ontario, from the Greater Toronto Area to Thunder Bay. If your town is not listed, call us — we will tell you honestly whether we can staff it properly rather than promising and then failing to turn up.

Related

• Autism — children and adults
• Cerebral palsy — children and adults
• Developmental disability — adults
• Home care — what it covers
• Respite care for family carers
• 24-hour home care
• All the communities we serve