A few Fridays ago, at 4:30 in the afternoon, my mother texted me a photo of my brother David’s face, his left eye bruised and a cut on his cheek. I spent the next hour and a half on the phone, talking with doctors and caregivers about what caused the injury; the one person I couldn’t ask about his black eye was David.
My brother is in his late 40s. He has severe autism and a combination of other intellectual disabilities; he doesn’t communicate much verbally except for his immediate needs. It’s not just that he can’t tell anyone whether and how he’s been hurt, he also can’t make decisions independently, and he needs 24/7 support for all of his daily activities, including bathing, dressing, and preparing meals. He lives full time in a group home about 15 minutes away from my folks’ place in Atlanta and spends his weekdays at a day program down the road.
David’s wounds were minor, and the story I eventually got about an accidental injury made sense to me. Still, that frantic evening was a sharp reminder of my brother’s vulnerability, and of my growing obligations to him. Although he has full-time care, I’ll eventually take over managing that care, and I still have a lot to learn and a fair amount of decision-making to do. Both my parents and I still stay up nights worrying what will happen once they’re gone.
It’d be easier to engage in magical thinking than to actually take a hard look at David’s future plans, and that’s often the tendency for people charged with the care of someone with an intellectual disability, says Anna Maki, director of the Bobby Dodd Institute, a Georgia-based nonprofit that offers support services and benefits navigation to people with disabilities.
“[Parents say], ‘I can’t die,’” Maki says. “That’s not really very feasible, but I get it.”
In 2019, around 7.4 million Americans were living with intellectual or developmental disabilities, a broad spectrum of conditions that affect how people learn and the skills they develop to live, socialize, and make decisions independently. There are at least as many ways to worry about how to get these people the care they need, especially after their parents are gone. I’m wildly fortunate that years ago, my mother undertook the massive task of getting David the services he has. We are in the minority: Nationwide, 70 percent of people with intellectual and developmental disabilities — known as IDD — live with family. Most have a range of unmet needs, and many of their caregivers are suffering: In 2023, 54 percent reported high levels of stress. The burden isn’t equally borne across Americans: Black families are less likely to have a support plan that details the kinds of care their person will need and how they’ll get it. Broadly speaking, families of color in the US have less access to services to support people with IDD.
In the US, many people struggle to opt in to a confusing labyrinth of services. Many states ration them, which just makes matters worse. Additionally, because states have developed their own processes for granting people benefits, the US has a patchwork of different IDD support and care systems that profoundly complicates interstate moves.
After the encounters I’ve had with this system so far, I can confidently say it’s a thicket of logistical and emotional challenges that often seems designed to fail families. While my state is worse than most at providing services to people with IDD, families all over the US are struggling to navigate their own states’ patchwork of resources. There’s no one-size-fits-all roadmap for planning the way forward, but I’ve learned a lot by combing through the Future Planning website run by The Arc, the US’s largest IDD advocacy and service organization, and talking to a range of experts about how all of this works. Services and support are out there, but it takes time, work, and patience to cobble them together.
If you’re one of the millions of Americans preparing to take on the care of an adult with IDD, odds are you’re asking some of the same questions and facing some of the same challenges I am. Here are some resources to start you down the path toward answers.
How involved am I going to be in my person’s care?
In the years after a child is diagnosed with an intellectual disability, many parents decide on living and educational arrangements depending on how much care their child needs, what services are available and accessible in the area they live, and how much financial support their state provides.
When the child becomes an adult, the calculus may change as they acquire new skills or desire more independence. Although parents of adults with IDD might be ready for someone else to take over caregiving responsibilities or for their child to move out, a variety of barriers often prevent this from happening: In 2019, 60 percent of adults with IDD lived in a family home.
The situation may shift again when someone else — often an adult sibling — takes charge of their care. For example, while a person’s parent might have been fine with caring for them at home, their adult sibling might not want the person as a roommate.
You can balance your person’s needs with your own, seek services their parents didn’t seek, and make different choices from the ones their parents made
These transitions can provoke distress for the person with the disability and feelings of fear or guilt in the decision-maker. However, it’s important to realize these moments can also create joy and excitement, says Luke Smith, community leader and executive director of L’Arche Greater Washington, DC, a nonprofit housing and support organization for people with IDD.
When an adult child with IDD has to move out of their childhood home and into a group home, it often “promotes the dignity of the person receiving the care,” Smith says, by allowing them to see themselves — and be seen by family members — as an adult.
As a new caregiver, you are allowed to do things differently than your person’s parents did, says Smith. You can balance your person’s needs with your own, seek services their parents didn’t seek, and make different choices from the ones their parents made.
Most people with IDD make daily decisions about their lives, and it’s critical to their dignity to support their autonomy and preferences in decision-making as much as possible. Depending on your person, you might be asked to help. If your person needs or wants someone else to make decisions for them — as my brother does — you could help do that in a number of ways:
- As a representative payee, you’d manage the person’s Social Security income and other benefits.
- As a power of attorney (POA), you’d make decisions for the person in one or a range of areas, potentially including health, money, housing, and disability services (a health care POA needs to be separate from any others).
- As a guardian or conservator, a court would be involved in the decision to remove the person’s decision-making authority (if a conservator, the limits are specifically on money-related decisions). The process for doing this is different between states; there’s often an associated cost, and the appointment might need to be renewed every few years.
The National Resource Center for Supported Decision-Making has resources to aid caregivers in navigating this sometimes bumpy terrain. If you need to explore guardianship or conservatorship, talk to a special needs attorney (consult The Arc’s helpful guidance first).
If you choose to opt out of being involved in your person’s care — and that is a valid choice — be aware that states may appoint a person or organization to assist with their decision-making, and their resulting quality of life may not be as good as it would with the involvement of a family member or close friend.
How do I take care of myself while managing all of this?
Interacting with the American IDD care system can feel a lot like running an obstacle course rife with pitfalls and dead-ends, and providing hands-on care to people with IDD can itself be overwhelming. For many of the tens of millions of people who provide unpaid care for adults with IDD, self-care is “a pipe dream,” says Maki. Broadly speaking, caregivers feel distressed and unsupported, and many have to abandon their own professional aspirations to do the work.
It’s hard to care for someone else without also caring for yourself. If you’re just starting to navigate the care system, state or local advocacy groups for parents, siblings, and caregivers of people with IDD can be a tremendous source of support and referrals, says Sequaya Tasker, who directs programs at The Arc. “You’d be amazed at how resourceful those particular groups can be,” she says. You can find these organizations by reaching out to your state’s agency for IDD (The Arc has a page that can help you find yours), while state IDD councils and the American Association on Intellectual and Developmental Disabilities are other good advocacy resources.
Local chapters of The Arc may also have family support resources, and I’ve recently been finding great support and comfort in SibNet, a Facebook group for siblings of people with IDD: I always knew there were many flavors of disability, but I never realized how many different ways there were to respond to it as a family.
Support is especially important for people providing hands-on care to people with IDD. Short-term respite care, which involves another person temporarily filling in for a primary caregiver, can offer caregivers several hours or days off from care to recharge; the ARCH National Respite Network is a good starting point for exploring respite options, and state IDD agencies may also offer respite resources. Getting paid for their caregiving work may reduce financial stressors for some family members; contact your state Medicaid office or your insurance provider for more information.
How will I get my person’s care and living expenses paid for?
The money that pays for your person’s care usually comes from a few different sources, aside from whatever wages they earn at a job and what the family can contribute. Most people with disabilities qualify for Medicaid insurance (which pays for health care) and Social Security (which provides them with a monthly income that can go toward living expenses).
Another government resource — but one that can be harder to access — is the Medicaid Home and Community-Based Services waiver program. It’s a long name for an important resource: Often shortened to simply “Medicaid waivers,” these programs take the money that states and the federal government would have spent on housing a person in an institution, and instead allow the person and their decision-makers to spend the money on community-based housing, day programs, and other services. (The reason for the odd moniker: “Someone who takes a waiver is waiving their right to an institution,” which Medicaid still guarantees to people with IDD, explains D’Arcy Robb, the executive director of the Georgia Council on Developmental Disabilities.)
People don’t automatically get a Medicaid waiver just because they qualify for one. The application process is different in every state: It usually requires supplying the results of medical and psychiatric evaluations, financial records, and other documentation, and it may involve a face-to-face interview. After all of that, the applicant typically lands on a waiting list, where they linger for an average of three years. States have a lot of control over how much money they spend on these waivers, and in states that don’t spend much, the waiting list is often longer.
Applying for all of these programs starts at the IDD agency in the state where the person lives.
Many of these programs require the adults who rely on them to have only a modest amount of money in their bank account. At the same time, it’s important for people with disabilities and their families to save up to pay for the things they want and need. There are a few strategies for saving that allow people to stash money in an account without making them ineligible for government assistance, including special needs trusts and ABLE accounts.
Lawyers and financial planners with a special needs focus can help set up trusts and ABLE accounts. The Arc has guidance on how to finance the future of people with IDD and find and talk to legal and financial professionals.
Where is my person going to live?
Some parents are eager to reclaim their time and independence once their child with IDD reaches adulthood, but others may want their adult child as a roommate. Many adults with IDD live with their parents well past the age of 18, but there are other housing options that both parents and future caregivers should be aware of.
“You don’t move house and get a new job and get married — or lose a parent — all at the same time”
It’s better to explore these options earlier than later, and if moving is necessary, it may go more smoothly if you start the process before a parent’s illness or death makes it necessary. “You don’t move house and get a new job and get married,” — or lose a parent — “all at the same time. You try and space them out,” says Smith.
Finding housing for your person depends in part on how independently they can meet their own daily needs, including their ability to buy and prepare food, clean their living space, access transportation, and maintain personal hygiene. It may also depend on whether they would rather live alone or with a roommate.
In many ways, having these choices is a sign of progress. For most of the 20th century, the US shuttered away most of its IDD population in institutions with dire conditions. In the 1970s and ’80s, the nation moved toward deinstitutionalization — that is, giving states money to house and employ people with IDD not in facilities, but in homes situated within communities of largely nondisabled neighbors.
Different states offer different housing options with various levels of state funding. Choices might include group, host, or adult family homes, where one or more residents with IDD live together with around-the-clock support, and supported living services, where people live in their own homes with supportive staff making visits as necessary. (Institutional facilities still exist to provide housing and 24/7 care to people with IDD, although they’re much less common than they were 50 years ago and their conditions are not usually ideal.)
Although a Medicaid waiver is often the golden ticket that opens the door to housing options, moving states means applying for a new waiver, a process that cannot start before establishing residency in that state, says Lauren Pearcy, executive director of the Tennessee Council on Developmental Disabilities. That’s worth keeping in mind if you’re planning a move for your person.
Maki says the best place to start the housing conversation is with your state agency for people with intellectual and developmental disabilities.
What is my person going to do during the day?
For many people with IDD, work is an incredibly meaningful part of life and a major contributor to their sense of purpose and belonging. However, 84 percent of these adults do not have a paid job in the community, and about half of those people wish they did.
When community employers are supportive of hiring adults with disabilities, people can sometimes find work alongside people without disabilities and earn comparable wages. That’s not always easy to do, however, and many people need help from a state vocational rehabilitation agency.
These agencies (there’s one in every state; find yours here) exist to connect people with disabilities with services that help them find and prepare for work — something they’re entitled to under the 1973 Rehabilitation Act. However, many states have waiting lists for these services, which are often funded by Medicaid waivers.
“We really want to get away from this notion of ‘special places for special people doing special things.’”
States may have other, non-waiver-funded programs aimed at getting people to work. Check with the adult education agency in your state (which you can find on this US Department of Education website) to see what they have on offer.
Having places in the community to explore hobbies and have fun is also key to finding purpose and belonging. For people who benefit from environments tailored to their needs, some creative Googling can help you identify recreational opportunities in your area. Your state council on developmental disabilities is also a good starting point for finding groups and organizations that offer activities and outings for adults with IDD.
While programs like the Special Olympics are a terrific recreational outlet for many people with IDD, there’s a lot of good that can come from seeking outlets that aren’t tailored specifically to people with disabilities, says Robb. “We really want to get away [from] this notion of ‘special places for special people doing special things,’” she says. If someone is interested in gardening, for example, look for a community garden club or for paid work in a nursery. Although not every club or employer is going to be receptive, she says, “Nobody wants to confine their life to the formal services and support system.”
