Young Adults With Special Needs in Group Living Situations

A few decades ago, it was expected that young adults with special needs (YASNs) would move directly from their parents care into a group home that would care for their special needs. While that option is much less normal today, it is still very much an option. There are few different kinds of group living that are appropriate for YASNs just leaving the nest.

Types of Group Living for Young Adults with Special Needs

• Boarding Home / ‘Supervised Living’: A large home owned by an agency that houses 5-20 people. The folks living there get regular but infrequent (often weekly) visits from a supervisor, and have on-call staff handy for urgent issues during the day and early evening, but are on their own overnight. Most such homes offer room and board for a flat fee, though there are many exceptions.

• Intermediate Care / ‘Group Homes’: Similar to a boarding home, but with 24-hour non-medical support available for the residents. Most often geared toward people with minor intellectual or developmental disabilities, and most often a single home will have aides trained to deal with a particular spectrum of special needs.

• Assisted Living Facilities: A facility that offers 24-hour medical support for the residents, including those who need assistance with basic Activities of Daily Life (ADLs) such as dressing or feeding themselves. A small (<10 bed) Assisted Living Facility is known as a 'Family Care' facility in many states.

Questions to Ask About a Group Home

While the categories of group living are fairly clearly divided by level of need, they don’t really tell you much about what day-to-day life is like in each kind of facility. That’s because there’s not really a lot of consistency between facilities; some offer just the bare minimum of state- and Federally- mandated support, and others are significantly more all-encompassing. So before you choose a particular home, be sure you know:

• What is the sense of community like between residents?

• How often does the facility schedule special events, community activities, and so on?

• What unique supports does the facility offer? (For example, do they have transportation available for shopping trips? How about to and from work?)

• How does the facility develop plans for residents with behavior issues? How involved are the residents in this planning process?

• How would you describe the relationship between the management and the local police, emergency responders, and neighbors? (NIMBYism is a big problem with group homes!)

• What can you do to incorporate as much of my old family routine into my new schedule as possible?

The Danger of Group Living: Abuse Is More Common

The one often-unexpected danger of group-living facilities is that, like nursing homes and similar places, there are more opportunities for abuse in group situations. While such situations are less common for young adults than with the elderly, they are particularly common when your special needs include an intellectual or emotional disability. If you’re considering a group home, make certain you talk about personal safety and how to appropriately respond to potential abusers with your family and caretakers.

The Challenges of Special Needs Housing: Waiting List Hell

Rather than talk about broad strokes and generics, we’re doing something different here. We’re drilling down to a personal level, to convey one of the greatest challenges of finding first-time housing for a young adult with special needs. We’re going to talk about what is happening in one of the states on the East Coast: Connecticut.

In Connecticut right now, there are more than two thousand adults with intellectual disabilities. Most of them live with their families, despite desperately wanting to be independent and live their own lives. Some have been waiting for so long that they are in legitimate danger of losing their primary caretakers — their parents — to old age.

The state laws of Connecticut promise to find housing for these people based on which of three priorities their situation qualifies them for — housing within a year for the top priority, and within five years for the bottom rank. But there’s a problem: the waiting list is broken. The priority system doesn’t work. No one gets housing, and they all just keep waiting.

The first problem is that state law prevents any intellectually disabled person from being placed in one of the state’s group homes unless they are abused, abandoned, or their primary caretakers pass away. There are literally families in Connecticut where the primary caretakers are decades past retirement, and the special-needs children they care for are approaching retirement age themselves.

The second problem is that there is simply no funding for the programs that are supposed to process the waiting list. The state has a billion-dollar budget for the Department of Developmental Disabilities, and the bulk of it goes to support the 961 people that are currently occupying all of the spots in state-run housing for adults with special needs, leaving the other 1,110+ just… waiting. One family has spent more than 23 years in the “one-year wait” Priority One group, and haven’t even heard from their caseworker in more than two decades. Their daughter is now 42, and her parents are near 70.

The third problem is the ‘aging out’ process — the moment a person with special needs turns 21, all Federal money that supported their education and therapy simply ends. At 20, they have a speech therapist, an occupational therapist, a physical therapist, several teachers, counselors, and more… and at 21, they have their parents. That places an unimaginable burden on the parents, but it also means that the waiting list is growing every day… and shrinking never.

Fortunately, Connecticut is only one state. Unfortunately, it’s not always better somewhere else. Across the entire nation, counting the entire population of people with special needs, fully 53% of all of them still live at home, with their parents. Another 31% live in supported, supervised, or assisted homes, 11% live independently, 3.5% live in foster situations, and 1.5% live in state-run institutions. No matter where you live, unfortunately, if you’re an adult with special needs, living with your parents is the norm.