It’s tough for anyone to find just the right living situation when mom and dad’s house is no longer an option. But throw in a disability and the answer to what’s next becomes even fuzzier.
With some creative thinking and an open mind, however, options abound, according to Mike Mayer and Derrick Dufresne, senior partners with the consulting firm Community Resource Alliance. The firm specializes in finding living situations for people of all abilities.
In this installment of Scoop Essentials, Mayer and Dufresne walk through residential options for people of all ages and give you the tools to create a situation that’s right for you.
Check out what Mayer and Dufresne have to say and then click here to submit your own questions to them.
Disability Scoop: What living options are there for people with developmental disabilities?
Mike Mayer: The oldest thing that is still available is an institutional setting. This is completely segregated from the community. The next oldest version is what is called a larger intermediate care facility for people who have mental retardation (ICFMR). In the oldest of them, up to 100 people might live there. They are typically very medically modeled facilities, with nurses and doctors calling the shots. The next oldest are 16-bed versions of the same kind of thing and they progressively get smaller down to six beds and four beds. ICFMRs tend to be very heavily regulated much more like nursing homes for people who have developmental disabilities.
In some states there still are people with developmental disabilities living in nursing homes or adult care homes, which were not designed or intended for people with intellectual or developmental disabilities.
Then we get to the newer generation of services where housing and services are separate from one and other. This tends to be called “supported living.” This environment may have from one to four people who have at least theoretically chosen to live together in the same environment.
Mixed in there somewhere are adult foster home arrangements where you have a family who says they’re willing to take someone into their home and provide supports and services.
Disability Scoop: Are residential options available for people of all ages or just those over 18?
Derrick Dufresne: Options are available for younger kids when parents or guardians make them available or if you find an agency who is willing to work on adoption options or child foster care. Or there are child caring institutions which are essentially residences for children, sometimes segregated by disability, sometimes by age. You can maintain guardianship and live in many of these settings but in many cases you give up control.
Mike Mayer: The reality is that for kids the options are much more limited. Ohio experimented some 20 years ago with a thing called the family consortium, where they had three or four families that got together to share the care for their children. The families hire the staff to work in those environments. It didn’t make the family give up being involved, but it helped them limit the amount of energy and stress that went into it.
Disability Scoop: Why would you choose one residential option over another?
Mike Mayer: A lot of people argue that because of the medical involvement or because a person doesn’t have the ability to walk or because they require special feeding assistance or because they have behavior needs or mental health challenges, that those people are best served in homes or groups or institutions that are geared toward those needs. But there’s no evidence that says that this is true and there’s a whole lot of evidence that says that this is not true. We know that people want to be in their homes, not something that is like a home.
Derrick Dufresne: If you separate housing and services, then whether or not somebody needs 24-hour support or drop-in support makes no difference. Then what you say is, let’s find this person a home that’s under the control of the individual either by lease or purchase. Then let’s make sure that they get the supports they need.
People should live in the areas they want to live in, with whom they want to live with. The number of people that live together is not based on diagnosis. It’s based on the same criteria most of us use which is who we feel we’re compatible with whether in an intimate, loving relationship or at least as roommates.
Disability Scoop: How much do these options cost and who pays for such living arrangements?
Mike Mayer: The single most expensive are the institutional environments. They can go as high as $900 per day, depending on size and all kinds of other things. ICFMRs tend to be the next most expensive. Then we look at community options. Those are by far the least expensive. In general, the bigger the setting, the more expensive and the smaller the setting, the less expensive.
ICFMR is a federal Medicaid program. Then there are the group homes that are in the community. Some of those are funded through ICFMR funding. Some of those are funded through Medicaid waiver funding. Some of them are funded with state funding. Then the individual options, the smaller options that we’re talking about, those are also funded by a combination of state and federal funds.
Disability Scoop: How can you decide what type of environment is going to be best for you and your needs?
Derrick Dufresne: We have to separate the housing and the supports. So the first part is, what supports do I need and who would I like to live with, if anybody? Then the housing component is, if you had your choice, what part of town would you like to live in? Is it important to you to live in an apartment or a single-family home? Is it important to live on a bus line?
Disability Scoop: If you’re going to live in a group situation or any type of already established residence, what should you do on the front-end to determine if it’s a good, safe and appropriate place for you? Are there any safeguards that you should be looking for?
Mike Mayer: Some questions to ask are: How many people have died there? How many people have been abused there? How many people have been neglected there? How many staff have been fired for abuse and neglect there? If you want to start with that very simple set of questions, the next thing you will find out is that the larger the facility, the more dangerous it is.
Derrick Dufresne: Regulations don’t keep people safe. People keep people safe. We are stunned by the number of people that live in the community that do not have a single person in their life other than paid staff and other than family, if they are available, that are in their lives. The one thing we say to people with disabilities and their families, especially to families, is find at least one person who’s in your kid’s life who cares about them who’s not paid to be with them. Find one person that’s in your kid’s life who’s willing to do unannounced visits. Find one person in your kid’s life that’s willing to go to the person centered plan meeting once a year. Find one person in your kid’s life that’s willing to take them out and be with them. If staff know there is somebody there in somebody’s life, they’re much less likely to cut corners than if they don’t have anybody in their life.
Disability Scoop: If you don’t see a preexisting option that’s right for you, what are some alternatives or more unique ways that people establish living situations for themselves?
Derrick Dufresne: Find a group of interested people who are willing to sit down and brainstorm. Let’s say there’s a family who lives on the south side of town and they want their loved one to live within three miles of their house. Then you brainstorm with the group about the options within three miles. When you do this, you separate the housing from the services and you can find things. It’s a process during the planning sessions of respecting what people are telling us about where they want to live and figuring out how to make it happen.
For supports, if you know that somebody wants to live in a setting with a roommate, it would be important for someone on the team to say, do these people have funding? If they don’t, how might they get funding? That would be the first thing. Then, decide who on the team is going to call the condo complex that you like. This shouldn’t be person centered planning; it should be person centered work.
Disability Scoop: Are the community-based options that we’re talking about available to people in all states?
Derrick Dufresne: Yes. The Medicaid waiver is available in all 50 states. But unlike institutions and some of these ICFMRs, there’s a cap on the number of slots available for Medicaid in each state. You have to be able to get a slot, which is usually held by the disability agency in the state.
Disability Scoop: Are there options that exist if you can’t get on the Medicaid waiver because you don’t qualify or you’re on a waiting list?
Derrick Dufresne: Absolutely. This is where you especially need creative people. Is there a person who’s elderly whose husband or wife passed recently who has a house where the person could live? In exchange for companionship or maybe in exchange for some support the elder needs, the person agrees to give free room and board. Are there options for people within their own communities through churches, charities or otherwise?
We never know, but we are rapidly reaching the place in the next three to seven years where there’s likely to be no more room (on the Medicaid waiver) and if we’re not thinking about this question, we’re going to have an even deeper problem.
Disability Scoop: What resources are available to help people who are looking at various residential options?
• Person-Centered Planning Made Easy: The PICTURE Method by Steve Holburn, Anne Gordon and Peter M. Vietze
• A pamphlet from the Minnesota Developmental Disabilities Council called “It’s Never Too Early, It’s Never Too Late“
• Michael Smull has a planning system called Essential Lifestyle Planning
• Within your community, call the local disability agency and ask if they have planning tools to share.