Somehow I don’t think my parents ever envisioned me in the “parental” role for my older brother with Down Syndrome. Or maybe they did, but they never told me about it explicitly. Maybe they were trying to protect me. Maybe they didn’t have time to think that far ahead.
I get it. And also, taking over his guardianship hit me a bit like whiplash when I was in the midst of managing their eldercare needs and my own young family.
Most typical parents don’t have to think about how their children will manage if and when they themselves, the primary caregivers, are unable to care for them. If all goes well and in the absence of lifelong disabilities - raising a child leads to an adult who will eventually care for themself, maybe others, and possibly even you, the parent, one day.
Parents with disabled children often do not have the luxury of knowing that their children will outgrow their need for caregivers. Either in the sense that their child will likely always need significant care, or in that their child may not outlive them.
When my brother was born in 1976, apparently my parents were told he would probably only live into his 20s. That he may never walk or talk, and that my they might as well put him away give him up as a baby. My mother rejected every bit of cynical and inhumane postpartum “advice” she was dealt that day, and when it came time for my birth, she chose the hospital in the next town over instead - in protest.
He did learn to walk and talk and so much more. Today, my brother Leif is 50 years old and in pretty good health. And at 47, with three kids of my own, I am his guardian. While I had a vague sense that I would always play some role in Leif’s care, my parents never really discussed guardianship or prepared me to take over his care at some point. It happened the way things in caregiving often do: scrambled into place by a crisis.
I feel incredibly thankful that Leif already had an excellent independent living setup when I took over. He lives in his own apartment with 24 hour care staff on site, but also has independence, his own space, and a genuinely supportive team of people to help him have the best life he can. The team manages his benefits, care and everyday life and activities, based on his goals, with lots of social opportunities as he chooses. Staff take him to yoga, organize community outings, picnics and parties. They arranged for staff to come with us to Disneyland so it would be doable with Leif and our three kids.
I don’t know how much my parents were thinking about me when they made the plans that landed him in his current independent living arrangement. In fact, when a place was offered in his current care program, I remember my mom feeling torn, like it was too soon to put my brother “in a home.”
There’s a negative association for parents of disabled children to the idea of placing them in non-family care arrangement. (I’m hesitant to use the terms “facility” or “home” because in many cases like Leif’s, that isn’t really accurate.) I would say that the stigma is worse than for adult children of elderly parents and nursing homes. But the spectrum of these options is huge, and as we have seen with Leif’s, they can be excellent.
However there are only so many places in programs like his - which has a waitlist far longer than the number of available spots. Community-based programs in the US average a wait period of around 39 months.
Most ‘typical’ group homes are nothing like this in terms of quality, because they require more than what can be provided by disability benefits alone. It strikes me that both of the high quality care homes my mother and brother ended up in are run by nonprofit organizations - that is, while the care is paid for partially by state benefits, it is also largely subsidized by philanthropy. The benefits allocated for disability care are simply not enough to cover high quality independent living.
This is a tough topic for those still in the thick of it. Parent caregivers of children with disabilities already have more on their plate than they can manage on a daily basis. Navigating physical disabilities, medical appointments, medications, school, needed accommodations on top of “regular” parenting. It’s overwhelming and exhausting. Add to the mix needing to create a life plan for ongoing caregiving, not only for yourself but for your children? It’s a lot.
But it’s also so important. Honestly, it has not been a small task for me to take on guardianship for my brother, something that I guess was assumed but never really discussed. I can’t imagine if Leif had been living with my parents and I had ended up in the situation of scrambling to figure out where he would live at the same time I was scrambling to care for my parents - and raising young kids.
First, the obvious but can’t-not-say-it part: in the US, and probably most parts of the world, we need more care funding and community-based options for families with disabilities. There isn’t enough support (in fact it is getting reduced by medicaid cuts), and it sucks and we need to acknowledge that and keep fighting for change.
I do not want parent caregivers to come away from this with increased guilt or stress about not having long term plans for their children figured out. And at the same time, I would gently encourage exploring the options, taking notes, asking questions, and as possible, filling in a rough plan for what will ideally happen when you’re no longer able to be the caregiver(s). The big things I would focus on:
Power of Attorney and Guardianship - who will take over for you if and when you aren’t able to be the decision maker and caretaker? What will their expected role(s) be, and have you talked to them in detail about it?
Living arrangements - Where and with whom will your child/dependent live? If there isn’t an obvious next-of-kin who plans to have your child live with them, have you looked into options for living arrangements and gotten on waiting lists?
Finances - What financial resources and support from the government and other sources does your dependent benefit from? Is all of this documented somewhere? Will those change at any point, and how?
Special Needs Trust - I highly recommend exploring the options and consulting a lawyer. The wording and different types of trusts can have major impacts on control and flexibility of the resources and whether or not they can be spent after death (including on burial expenses). I have seen other families learn some some painful and expensive lessons when it’s too late.
You won’t be able to plan everything perfectly, things will inevitably shift and not go as planned and you’ll probably still have to make some of the difficult decisions under pressure. But you’ll have ideas, documentation and backup plans in place that will put you way ahead of the curve.
I’m looking forward to exploring different models for disability and eldercare here in Spain and in Europe more broadly - more to come on that soon.
I would love to hear from other families who are caring for children and adults with special needs. Have you made plans for an eventual transfer of care? Or have you taken over care for someone with disabilities from someone else? What seem like the biggest challenges to passing on caregiving duties and what do you wish you had known or done differently?