Most young people aspire to live outside their parents’ home one day. But for those with intellectual and developmental disabilities (I/DD), this dream can be difficult to realize.
For parents of children with I/DD, the question of where our children will live once they reach adulthood can weigh heavily. Many of us find it hard to imagine how our child could ever live outside the family home, but living on their own is achievable for those who want it. While there is no one-size-fits-all solution, learning more about the housing and supported living options that are available for adults with I/DD can provide comfort and hope to us as parents, helping us envision a future where our child will be able to live as independently as possible.
To learn more about the policies and public benefits related to housing and supported living, we spoke with Sofia Cervantes, advocate with the California State Council on Developmental Disabilities. To learn more about how parents can plan financially for their child’s future housing and support, we spoke with Michelle Wolf, executive director of Jewish Los Angeles Special Needs Trust (JLA Trust). We also spoke with people representing a variety of housing and supported living models, including Scott Shepard, MA, Ed, executive director of Avenues Supported Living Services; Rose van Wier Hein, executive director of Golden Heart Ranch; and the staff of Homies, a “life-sharing” program for people with disabilities.
It’s important to distinguish between a parent being forced by circumstance to place a child in a residential treatment program versus an adult choosing to live independently of their parents. Residential programs are necessary and important in certain circumstances. (Stay tuned for our upcoming article about residential programs.)
But for adults with I/DD who voluntarily choose to live outside their parents’ home, there are two main housing models: Community Care Facilities, also known as group homes, and supported living. Within each, there are variations to accommodate residents’ different needs, preferences, and circumstances.
Known as a Community Care Facility in California, a group home provides 24-hour nonmedical residential care to adults with intellectual and developmental disabilities. In California, these homes are licensed by the state Department of Social Services, and they are designated on a scale from Level 1 to Level 4. The higher the level, the more specialized and intensive the care and supervision provided. Level 1 homes provide care and supervision to residents who have self-help skills, while Level 4 homes serve residents with significant challenges in self-help skills or with physical impairments, behavioral issues, or self-injurious behaviors.
Group homes are usually run by nonprofit organizations. They range in size from single-family homes housing two to three residents to large institutions. They have paid staff to support residents on-site 24/7. Some group homes also offer day programs that can be attended by nonresidents.
Hope Homes is an example of a Community Care Facility. Founded in 1995, it offers several different housing models, including 24-hour residential care, supportive housing, and “College to Career (C2C).” Hope’s 24-hour residential care housing is designed for adults with higher behavioral and medical needs, and it provides round-the-clock support from on-site staff. The supportive housing model is designed for residents with less significant needs who desire to live more independently while still receiving support services from staff; often, these are adults who are transitioning from 24-hour care or from living in their parents’ home. The C2C housing model provides adults with I/DD who are attending college with dorm-like housing with support services. All three of these programs are available only to Regional Center clients in California.
Group homes can be appropriate for many adults with I/DD, but there are potential downsides to consider. One drawback is that residents usually have no say over who moves into the home. Most of us want to choose who we live with, so the lack of choice in who lives in a group home can be a significant drawback.
Another drawback is that residents in some group homes may have little say in how their days are structured. However, some group homes do honor and support individual choices. If you are considering a group home, this is a question to ask.
The alternative to a group home is supported living. Supported living means that the individual lives in a place of their own and receives support services that enable them to live with as much independence as possible. The most common supported living arrangements allow individuals to rent a home or a room, to purchase a home, or to live in a “purpose-built community” that has been designed to serve adults with I/DD.
The main difference between a group home and supported living is that the person has more choice about where they live and who they live with. Another difference is that support services providers come into their home to provide the assistance they need, as opposed to those services being provided by on-site staff in a group home. Services may include anything the individual requires assistance with – personal care, household chores, budgeting, meal preparation, medication management, transportation, and more.
Shepard says, “Supported living services will provide as much support as people need to live safely and securely in their own place and to be included within their greater community, and that includes people that need 24/7 support, seven days a week, to be safe in their own place.” Access to so much support, he says, opens doors quite literally for anyone to live in their own place if they so choose.
If you’ve never really considered the idea that your child could one day live in a place of their own, it might seem impossible. But the experts and parents we spoke with agree that it is possible for everyone.
“Even people with the most significant disabilities can live in their own place with the right supports,” says Shepard. “Whether you have behavior issues, communication issues, physical challenges, you can still live in your own place if you want to, with the supports you need through Regional Center–funded Supported Living Services.” (More on these services below.)
The most common scenario for supported living is for the individual to rent a home, where they might live alone or with roommates. The benefits of this arrangement include independence, integration in the wider community, choice of location, the ability to live similarly to their nondisabled peers, and more choice in how they spend their days. A downside is affordability. Affordable rental housing is hard to come by, especially if the individual is not employed full-time. For California residents, Regional Center funds generally cannot be used to pay for rent and other housing, and that includes Self-Determination funds (more on this below under “How is housing funded?”). Finding a roommate who is a good fit can also be challenging.
Alternatively, an increasingly common trend is for parents to build an accessory dwelling unit (ADU) on their property for the purpose of housing their child in adulthood. This can provide the individual with a greater degree of independence while still allowing them to stay close to home and family. If the ADU has a second bedroom, it can be rented to a roommate, which helps offset costs.
There are also housing providers that provide rental housing specifically for adults with I/DD. Hope Homes, in addition to operating group homes, provides independent living homes for residents who require less support and want to live independently. Hope Homes purchases, renovates, and maintains single-family and multi-family houses and condos, and they rent units to adults with I/DD at affordable rates. Residents pay 30 percent of their income toward rent, have their own bedrooms, and share common living spaces.
Another option is to purchase a home. The benefits are similar to renting a home: stability, independence, integration with the wider community, and autonomy. The main downside is, again, affordability. But for those who can afford it, buying a home for your child or bequeathing your home to your child after you die can be a good option.
Shepard says he has worked with several clients who have inherited homes or who have purchased their homes through their employment income, family support, and public benefits income. Some of these have done so on their own, and others have done so jointly with a friend.
Currently he has two clients in their seventies and eighties who each live in the home they grew up in. “Their parents left the homes to them, which was great foresight,” he says. The fact that their parents bequeathed these homes to them gave the women continuity and stability in where they live. “They’re very comfortable living where they’re living now, and we continue to provide supports to them.”
Purpose-built communities are designed specifically to serve individuals with I/DD. There are many benefits to this model. Residents benefit from a community that is specially designed to meet their needs and allows them the opportunity to live with peers, often in a homelike setting.
Van Wier Hein is creating such a community. The mother of a child with epilepsy and autism, van Wier Hein knew she needed a plan for her son’s future.“Just like every other parent out there, I was wondering what’s going to happen when we’re not here anymore,” she says.
In 2006, when her son was about 10 years old, she visited a farm in the Netherlands, and she knew it was the right kind of place for her son. Inspired, she and a group of donors and supporters created Golden Heart Ranch. Today, the Ranch, located on 22 acres in Agoura Hills, provides a day program five days a week. The program includes art, music, dance, yoga, gardening, cooking, social clubs, community outings, vocational training, and more.
The Ranch is also breaking ground on four residential homes that will be located on the property. Each home will house four “ranchers,” who will have their own bedrooms and will share common living areas.
“Each house is a family-style home, which was very important to me,” says van Wier Hein, “because us as parents, when we’re no longer here, want to make sure that there is still that connection and family.”
Van Wier Hein envisions homes that will operate much like other family homes: residents will leave in the mornings for their daytime activities – whether to work, volunteer, or attend day programs – and then return in the evening to share a family meal. She envisions that each home will have a house “parent” to oversee the home and coordinate schedules. Each house will be built with an elevator, so that the residents can age in place.
There are many purpose-built communities with different models. The Camphill Association of North America provides “life-sharing” residential communities in the U.S. and Canada, where people with and without disabilities choose to live together in what the organization describes as “intentional communities.” Every Camphill household consists of “experienced householders,” who function something like house parents, as well as their children if they have any, one or two volunteers, and two or three residents with disabilities. Like Golden Heart Ranch, the model is a family home, where residents share mealtimes but also have independent lives outside of the home.
Sunflower Hill is a nonprofit organization that develops affordable residential communities for individuals with I/DD, including autism, Down syndrome, cerebral palsy, epilepsy, and other genetic conditions. Its community at Irby Ranch provides 30 one- and two-bedroom rental apartments. It does not operate a day program or provide services, but rather provides an affordable residential community with amenities and “enrichment programs” for residents.
The biggest downside of purpose-built communities is supply: there are not enough of these communities to accommodate all adults with I/DD. Another downside is that some are more segregated from the community at large, and there may be fewer opportunities to integrate with nondisabled peers. But many communities prioritize life-sharing and integration with the larger community.
A variety of creative alternative models offered by private companies and nonprofits seek to fill the need for more housing and supported living options for individuals with I/DD.
Homies is one of the more ambitious and innovative models we’ve encountered. Homies is not a housing provider or developer, but rather describes itself as a “life-sharing platform.” Homies matches an individual with I/DD with a “supportive roommate,” and if both feel it is a good match, they move in together. As the name suggests, the “supportive roommate” is both a roommate and a built-in support services provider.
Ackerman says that the model is first and foremost about providing individuals as much choice as possible about where they live and who they live with.
To begin, an individual creates a profile that describes themself, where they want to live, and who they want to live with. The profile includes not only what supports they need assistance with, but information about themself and how they live, such as whether they have pets, how tidy they are, whether they are a morning person or a night owl, and what they like to do in their free time. Homies will seek a roommate who is a good match in terms of lifestyle and interests and who is also able to provide the needed supports. The individual then meets and interviews the prospective supportive roommate a few times before deciding whether to move in.
Like any roommates, the individual and their supportive roommate share common spaces and the routines of daily life. They might do things like share meals and watch TV together. But the supportive roommate is also there to provide support services and skill development. This might mean providing transportation, grocery shopping, personal care, or other supports, depending on the individual’s needs. It also means helping the individual with their personal goals. For example, if an individual wants to learn to cook, they could be matched with a supportive roommate who enjoys cooking. The roommate is compensated for the support services they provide (some support services may be provided by outside Regional Center–approved vendors as well), but Homies emphasizes that the role goes beyond a client-staff relationship.
“Quite simply, they’re sharing a life together,” says Garrett Ackerman, Homies’ founder. The individual with I/DD benefits from a consistent relationship, rather than services provided by a rotation of shift workers. The supportive roommate benefits in this way too, by becoming invested in the individual’s life and goals.
Supportive roommates apply to be part of the program and undergo extensive background checks. Homies prioritizes finding roommates who have compassion and experience with people with I/DD. Many of the roommates are people who work in the field or have relatives with disabilities.
To participate in Homies, an individual must be a Regional Center client and at least 18 years of age. The program is best suited to individuals who want to live independently, have some basic life skills but need some support, and are invested in developing their skills. Ackerman says it’s ideal if the person has a good support network in place (parents, siblings, friends), but it’s not essential.
Homies may or may not be the best fit for your child, but the creation of new models such as this is a hopeful sign that more people are acknowledging the importance of this issue and seeking solutions.
Which housing option is best for your child will depend on them – their needs, their preferences, and their choice.
“That choice of where a person wants to live should be person-centered,” says Cervantes. “It should be based on the wishes and desires of the person.” The fact that we should be able to decide where we want to live is a given for most of us, and it should be for people with I/DD, too.
Families often assume that living at home is what their child wants and will always want. But by making these assumptions, we not only fail to account for the eventuality that in most cases our children will outlive us, we also fail to consider their autonomy.
Talk to your child
Even if your child has never expressed a desire to live on their own, it’s important to talk with them about the possibility and expose them to the options. If you and they are interested in a purpose-built community, call or visit a few communities, even if your child is still years away from moving out. If you’re considering supported living, interview supported living service providers and be sure to involve your child in the process. Only with this information will your child be able to imagine another future and make their own choices. If they choose to live at home for now, they might choose something different in a few years. Their choices and needs should guide the process.
Make it “person-centered”
When Cervantes says that the choice of housing should be “person-centered,” she is referring to a concept found throughout the disability services world. Person-centered planning means planning that is focused on the unique needs, preferences, and goals of the individual. It is a requisite part of the Regional Center’s programs. For example, Self-Determination Programs and Individualized Program Plans are meant to be developed through a person-centered process. In reality, many practices don’t live up to the ideals of person-centeredness. But as parents we can advocate for our child’s choices to be prioritized.
Shepard says that a hallmark of a person-centered program is the acknowledgment that “everybody’s lives are different.” No two people are exactly the same, so no two people’s days should look exactly the same. “If everybody’s lives look different and they’re doing different things, that means that we’re listening to them,” Shepard says, rather than putting them into a predetermined program or plan. “Our job is really to learn how to listen better to the people we support and their families and to be able to follow their lead.”
Lack of affordable housing is a widespread problem, and adults with I/DD are especially impacted. This is because they tend to work less and earn less money than nondisabled adults do. As a result, paying for housing can be a major challenge.
So how do adults with I/DD pay for housing?
Individuals with I/DD typically pay their housing costs with their own funds and income. This is usually in the form of government benefits or a combination of benefits and employment income. Some may also have financial support from family. There are also housing vouchers that can help pay for housing, but these are hard to come by.
It’s important to note that California Regional Centers generally do not pay for housing costs. However, housing support may be available in very limited circumstances—such as when a person is already receiving Supported Living Services (SLS), is at risk of homelessness, and also meets the additional requirements outlined in the Department of Developmental Services’ April 2025 housing directive, explains Sofia Cervantes. That said, it is likely that only a small number of Regional Center clients would be eligible for this funding.
Supplemental Security Income (SSI) is a need-based cash benefit for children and adults with disabilities who have very low household income. Many adults with I/DD rely on SSI as their primary or sole source of income.
To qualify for SSI, adults must meet certain criteria. They must have a disability that is expected to last for at least 12 months or to shorten their lifespan. They also must be deemed unable to engage in “substantial gainful activity” (SGA) due to their physical or intellectual disability. SGA refers to a certain level of income (the level is established by the Social Security Administration, and it usually goes up each year as national average wages rise). If an individual is unable to participate in enough work to bring in that amount of income, then they might be eligible for SSI.
Having SSI does not mean that the individual cannot work. It means that if they work, they are not expected to earn above a certain amount through their work. In fact, many people who receive SSI do work. Having income from employment will reduce the amount of SSI they receive, but the combination of SSI and employment income will always be more than SSI alone. It’s important to know this because many people fear losing their benefits and might avoid work under the misconception that working will cause them to lose their benefits or lower their overall income.
Shepard says, “There’s a lot of work incentives that are in place once you have SSI that will enable you to continue to work and still maintain some benefits. Your benefits will [be] cut a little bit when you work, but what we want to share with families is it’s always more advantageous to work and receive even a lower rate of SSI. You’re always going to make more money by working than if you’re not working.”
Unfortunately, most people with I/DD do not work. A national survey found that only 34 percent of adults with I/DD ages 21–64 are employed. But advocates say that most or all are in fact capable of doing at least some work.
“Everybody can work, even if it’s part-time,” says Shepard. He has some clients who work only a couple of hours per week because that’s all the stamina they have. The point is that support and accommodations, including one-on-one attendants if needed, are available so that everyone who wants to can work.
The additional income from employment, however little, is helpful. “If you’re receiving SSI only, then people are generally living at a poverty level,” says Shepard. “So we really encourage people to [work] – even if it’s just a part-time job or even sometimes multiple part-time jobs, that is really helpful.”
In addition to extra income, employment also provides structure to a person’s days, allows them to contribute and feel accomplished, and gives them a sense of purpose. For more on this topic, see our article on Supported Employment.
Section 8 Housing Choice Vouchers provide subsidies so that people with low incomes, the elderly, and people with disabilities can afford private rental housing. With a housing voucher, the individual will usually pay only 30 percent of their income toward rent, while the remaining amount is covered by a subsidy. Housing vouchers allow for individualized housing choices, because the individual chooses the place they will live.
“A housing voucher is like gold,” says Shepard. “If they maintain all the requirements for eligibility, they can keep that for the rest of their life.”
Unfortunately, housing vouchers are very hard to come by. Waiting lists are many years long, and the supply of affordable housing is low. Still, Shepard says that everyone should get on a waiting list if they can. There may be separate lists in your city and county; if so, apply to both. Advocates are working to increase availability, but don’t count on a voucher to fund your child’s housing anytime soon.
ABLE accounts allow individuals on public benefits to build savings without the risk of losing their benefits. ABLE stands for “Achieving a Better Life Experience.” Normally, people receiving public benefits cannot build savings of more than $2,000 or they may lose their benefits. But an ABLE account is a loophole that allows individuals to save more without putting their benefits at risk.
ABLE accounts can create more financial security for people with I/DD who rely on public benefits. They enable an individual to save up for big purchases or put money away for the future. Not only the individual accountholder but also others, including their parents, relatives, friends, or a trust, can contribute to the account. Funds in an ABLE account can be used for a variety of eligible purchases, including education, transportation, and housing. For homeowners, an ABLE account enables them to put away money to cover the ongoing expenses of homeownership such as insurance, maintenance, and repairs.
Cervantes notes that ABLE accounts are available in most (though not all) states, and it’s possible to open an ABLE account in a state other than your home state, instead of or in addition to opening one in your home state. The terms of ABLE accounts (fees, account limits, etc.) vary state by state, so you’ll want to research these to determine what the best option is for your child.
A special needs trust is a legal instrument that enables parents and guardians to set aside money for their child’s future, which as adults they can use to supplement their government benefits. Funds in a special needs trust can be used to pay for expenses including housing.
Wolf explains the concept of a special needs trust: “What it means is parents or grandparents or some other relatives – we’ve had some aunts and uncles as well – have set aside some money, typically after their passing, that’s going to be inherited by an individual with special needs, often intellectual and developmental disabilities or other disabilities that would qualify them for government benefits, such as SSI.”
The special needs trust is essentially “a legal loophole,” says Wolf, that enables individuals to keep their government benefits and also be able to access additional funds through the special needs trust. The funds are administered by a trustee and can be used to provide supplementary income or to support specific purchases the individual would otherwise be unable to afford.
A trustee of a special needs trust has a very specific role. “The trustee is in charge of giving out money, paying bills,” Wolf says. “They’re not the conservator, they’re not the one making day-to-day decisions, and they’re certainly not the ones providing the day-to-day hands-on care. What they’re doing, though, is they’re coordinating and helping to pay for all of that hands-on care or living arrangements and other bills that need to be paid.”
Parents often think that a sibling should be the trustee, but this is not recommended because it is a major responsibility and can put them and their disabled sibling in an uncomfortable dynamic. But siblings can serve as a “trust protector,” a role that allows them to be a liaison and an advocate for the beneficiary, without having the legal responsibilities of a trustee.
If your assets are under $1 million, a pooled trust may be best for you. A pooled trust is a way for multiple beneficiaries to pool their funds in investment accounts that are managed by a nonprofit. Pooling funds under a single umbrella Master Trust governing document is more cost-effective (with lower fees) and allows for more investment opportunities.
Families who are interested in setting up a trust should contact a fiduciary to discuss their options. JLA Trust is one such fiduciary, but there are many others; you can review a national directory of fiduciaries here. Financial assets that might be part of a trust include retirement funds, pensions, life insurance policies, stocks and bonds, or real estate for those who are homeowners.
For homeowners, Wolf notes that it’s important to make sure the trust includes sufficient funds to pay for the ongoing expenses of owning a home. These include property taxes, insurance, and maintenance and repairs, and may also include contracting with a professional property management company, which Wolf highly recommends.
In everyday conversation, when we say that a person with I/DD is “living independently,” we might be referring to any number of situations where an individual is living in their own place with some kind of support. You will also hear this referred to as “supported living,” which is how we referred to it above.
The common uses of these words are different from what the Regional Center refers to as “independent living skills/services” (ILS) and “supported living services” (SLS). These terms designate specific programs the Regional Center provides to clients, depending on their goals and circumstances.
Independent living skills refers to the skills a person needs to live on their own, such as cooking, housecleaning, and money management. ILS provides one-on-one training to teach these skills. The Regional Center will pay for this if the skills are part of the person’s Individual Program Plan (IPP). People who receive ILS might already have basic self-help skills but need help to learn and maintain other skills that they need to live on their own. For example, they might be able to groom and dress themselves but need help to learn how to plan nutritious meals and shop for groceries. They might be required to do a skills assessment to receive ILS.
An individual can receive ILS while living in their parents’ home, their own home, a friend’s or relative’s home, or a licensed facility. Often they are seeking ILS because either they are living on their own or they want to live on their own.
“Independent living is really a focus on people that either live in their own place or are looking to live in their own place. They may live with their parents now, but [are] looking to move out in the near future, something like that,” says Shepard. “And it’s a time-limited service that’s really focused on skill building, whether it’s how to access your community, budgeting, cooking, or anything that sort of supports the idea of living more independently or living in your own place.”
According to the California Department of Developmental Services, an individual may receive a maximum of 80 hours of ILS per month, although exceptions can be granted if a person requires more.
With ILS, individuals set goals and work to become independent with the skills they’re learning. However, the Regional Center is required to provide ILS services for as long as the person needs the services and is able to show they are benefiting from them. According to Disability Rights California, even though some Regional Centers may say they will provide these services only for a limited time, that is not consistent with what the law requires.
Supported living services are provided to help people with I/DD live on their own. (SLS is not for people who want to live with their parents.) The services are ongoing and not necessarily focused on becoming independent with a particular skill. With SLS, it is acknowledged that the individual might always need assistance with particular skills or areas of life. For example, a person may use SLS to hire a personal attendant to assist them with activities they cannot perform alone.
SLS can be used for a wide range of services – essentially, anything that a person needs to live in their own home, live as nondisabled peers do to the extent possible, make their own decisions, and develop a social life. For example, SLS can be used for anything from developing an exercise routine to finding and participating in recreational activities in the community to creating a social circle to setting goals for employment and schooling.
“Supported living services is for basically anyone that wants to live in their own place, whether they rent or lease or rent a room, or some people are fortunate enough to actually even work towards owning their own place,” says Shepard.
You will likely need to work with multiple agencies, but the first and primary agency you’ll work with is the Regional Center.
Regional Center
“The Regional Center is the resource hub,” Shepard says. Your Regional Center will assign you a service coordinator who will connect you with service providers to support your child’s goals for living independently.
The services that Regional Center will provide are based on the goals in your child’s Individual Program Plan (IPP), so if you plan to request a service, make sure it supports their IPP goals. The IPP is the agreement between the person and the Regional Center as to what the Regional Center will be accountable for providing to that person. So your child’s goals for their life need to be reflected in that agreement if you want the Regional Center to support those goals.
“It’s really important to document that in the IPP,” Cervantes says. “Many times what we see is families wanting support in the area of supported living. However, it’s never mentioned in the IPP, and therefore Regional Center has never really taken an active role to support them in that life area.”
The Regional Center will connect you with vendored SLS or ILS providers. Before the Regional Center will pay for these services, however, it requires you to exhaust other funding options first. “Regional Center will always require that families seek services and supports from generic resources first,” says Cervantes.
“Generic resource” means any resource other than the Regional Center. When it comes to the services your child will need to live on their own, some of these may be covered by your private health insurance if your adult child is on your plan, or by government programs, especially Medi-Cal and In-Home Supportive Services (IHSS). Regional Center will require you to use those funding options first. If your child needs more hours or services than these resources provide, then you should approach the Regional Center to fund the additional hours or services.
IHSS
If an individual needs personal care services, often such services can be covered through In-Home Supportive Services (IHSS). However, Cervantes says that if, on the other hand, an individual is seeking support to learn a skill (e.g., meal preparation) so that they can eventually perform it independently, IHSS might not be the appropriate option, because with IHSS a person is hired to provide services for an individual, not to teach them to be more independent with a skill.
DOR
When it comes to employment support, the primary generic resource is the Department of Rehabilitation (DOR). Cervantes says that families should be connected with the DOR when their child is preparing to graduate from high school and transition to adulthood. The child should undergo an assessment to determine their needs and explore what services could be available for that person regarding employment.
DOR services are limited, however, and might not provide everything your child needs to attain and maintain the job they want. “So, for example, the Department of Rehabilitation may provide job coaching, may support someone in their interview process and preparing a resume. But once they enter the job after a certain amount of time, [DOR] may not be able to provide someone to consistently attend the job with them at that point – Regional Center, based on the need, may be able to provide that.” If an individual requires a one-on-one attendant at their job, an SLS provider paid for by the Regional Center can provide that service.
Others
In addition to the Regional Center and DOR, Cervantes recommends that parents become familiar with agencies like her own, the State Council on Developmental Disabilities, which can provide information and advocacy resources to ensure people with disabilities can access the services and support they need. The State Council on Developmental Disabilities' website has a resource page which lists advocacy resources by topic (self-advocacy, housing, employment, etc.). Cervantes specifically recommends that parents be aware of Bet Tzedek Legal Services, which specializes in legal rights of adults with I/DD. Families can contact Bet Tzedek when challenges come up with accessing government benefits or possible discrimination, or when they have questions about their rights.
Planning for your child’s future living situation is daunting. It can help to know that you’re not alone. Van Wier Hein says that in her parent support group, “it’s the biggest concern in every meeting; it always comes back to that topic: what am I going to do?”
Start early
Van Wier Hein’s advice to other parents? Start planning now. “That’s my advice: know what’s going on out there and start early.” She knows what it’s like to be overwhelmed by this topic. “It takes guts, because you don’t want to look at that, really, but you’ve got to.”
Shepard advises parents to start now, even if you’re planning to keep your child at home for the next several years.
“Go check out agencies now with your son or daughter. Have them at least participate,” he says. “Go visit, view what’s available, what are the services, so that at least you have an idea.”
One reason to start early is that organizations with good reputations often have waiting lists. Shepard advises parents to interview at least three service providers to get a sense of the options and what will be the best fit for your child.
Address the elephant in the room
Most children outlive their parents. That wasn’t always the case for children with I/DD, but with advances in medicine, healthcare access, and supportive services, many people with I/DD now have lifespans comparable to that of their nondisabled peers.
“You need to expect that your adult son or daughter, they’re going to outlive you. And we need to have a plan,” says Shepard. “The majority of adults right now with developmental disabilities, 80-some percent, continue to live with their aging family members, and many of those individuals are in their sixties, which means their family members are in their eighties. And that’s worrisome, because what is the plan?”
Cervantes says that the COVID-19 pandemic provided a harsh reminder of why parents need to plan ahead. “One thing that we saw happen during the pandemic in 2020 and beyond [was] the immediate reality that some adult individuals with disabilities had to face losing their loved one, and they had no plan,” she says. “Where would they live? Who would make their favorite sandwich? And that sounds so trivial, but that can be life-changing when that person has grown up with a certain routine and has never been exposed to anything else.”
Cervantes says, “Even if the concept is ‘I think I want to live with my family forever,’ it doesn’t mean that throughout that journey, I shouldn’t be preparing for knowing what I would do and how I would do it, to live independently if and when my parents are no longer here.”
Talking to our kids about the fact that we will one day die is painful, but avoiding the topic can cause more pain in the end. If we allow our kids to think they will live with us forever, this can be comforting for now, but they might end up unprepared when we pass away.
Shepard gives the example of a client named John who lived at home with his mother. John was nonspeaking and required 24/7 care. Shepard urged John’s mom to consider other living situations for her son, but she felt that he should stay with her. Then she passed away suddenly from a heart attack. With no plan in place, the Regional Center had no choice but to find an emergency placement for John. This ended up being a group home, where he struggled to adapt to many changes on top of the sudden passing of his mom.
Don’t assume their siblings will take the reins
Some of us assume or expect that our other children will step in to care for their disabled sibling once we’re gone. But this can put siblings in a challenging and sometimes untenable position.
“It’s important for parents to know that even when a sibling says, ‘Oh yeah, I definitely want to be there for my brother and my sister,’ that their life circumstances can change,” says Wolf.
Siblings age, too. By the time you’re gone, they might have their own families, health issues, and other considerations that could make it hard for them to take on the responsibilities of managing their sibling’s care and finances.
“I think that’s something that has to really be thought through,” says van Wier Hein, “because it’s not automatic that we can say, ‘Here you go. You’re in charge.’”
Van Wier Hein says that in her experience, “almost never” do siblings want to take on the responsibilities of their disabled sibling’s care. “I still see parents that say, ‘Well, they don’t have a choice.’ And that’s not right either. You know, that puts a tremendous burden on that sibling and eventually their partner. It changes their whole life. They just took on something that is lifelong.”
Fortunately, if we plan well, our child will have the resources and support they need to live without us, and their siblings will be able to focus on their most important job: just being a brother or sister.
Talk to a financial planner
Housing is expensive, and maintaining a home as a homeowner is very expensive, so it’s important to start thinking about how to fund these costs. Wolf recommends talking to a professional financial planner. Even if you’re a young parent or don’t have many assets, there are steps you can take. For example, life insurance is something anyone can purchase, and it is less expensive the younger you are. Wolf notes that parents can also set up annuities or other long-term investment options. A professional financial planner can help you develop a plan specific to your situation and goals.
Help your child envision the possibilities for their future
Many people with I/DD continue to live at home with their parents after they graduate high school, sometimes for years. Often this can be helpful as they adjust to a new phase of life. But it is important to introduce your child to other possibilities.
“If we leave [living at home] as the only option, then it’s important to consider that we may be limiting an adult from exploring the full not just potential, but full enjoyment of their life,” says Cervantes.
Cervantes says that even if you and your child both want them to live at home for as long as possible, never considering other options could deprive them of chances to grow as a person. Leaving home gives us a chance to grow in ways we otherwise couldn’t.
“As an adult grows up, any adult – disability or not – there is a certain growth that occurs when that person leaves their nuclear home, their family home, and so that should be expressed as an option, that should be presented as an option for a person to consider.”
Success story
Although this can be a scary topic, parents have a lot of reasons to be hopeful. There are more possibilities and more support now than ever before for our children to live independently.
Shepard’s client John, who ended up in an emergency placement in a group home after his mom passed away suddenly, is a case in point. John’s sisters were at a loss seeing their brother struggling and unhappy in the group home, but not believing there were any other options. Shepard suggested a person-centered planning meeting.
“The sisters felt [that] John needs a lot of help. He won’t be able to live independently,” Shepard said. “And so I asked the sisters to bring him out on a weekend and just visit one of the other gentlemen we support and his roommate, who has very significant disabilities as well. “ When they visited, the sisters and John saw a man with disabilities similar to John’s who was getting the support he needed to live successfully on his own.
Shepard says the sisters were very surprised. “Oh, he lives in his own place. Oh, I guess John can do this.”
To which Shepard replied, “Yes, of course he can.”
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