"Group Homes & Other Alternatives" by Glenn Vatter
The key thrust of this website is to discuss living arrangements for persons with autism when they become adults. This is a difficult topic for many parents to get interested in, in detail, when their child is younger because they are in a full time struggle for survival with other issues. They are trying to find interventions to alleviate the autism symptoms, trying to deal with the school district to get the appropriate education, trying to live with the quirky and often impossible autistic behaviors, trying to get funding for expensive interventions. Worrying about future
living arrangements may be down the list of priorities.
Without trying to scare these parents, I must warn that their problems don't end when the child is 21 years old. When the mandated requirements of IDEA no longer are in play, there is another struggle ahead. If you think you can simply place your child in a group home, well, it may be every bit the struggle you had with all the other issues of the past. There are long waiting lists for group homes. You may not wish to go that way, anyway.
Over the last few years, by government mandate, the large institutions run by the government and by private agencies have been disbanded and shut down and the persons moved into group homes. The group homes are generally managed by the same people who worked in the large institutions and the
programs are the same, the only thing changed is the size of the living units. With most institutions closed now, and the
government having purchased and set up all the group homes, the government sees that part completed and, at least in my area, has announced they will not develop any more group homes. So, the waiting lists get even longer. The
government's method now is to encourage and help private agencies to develop group homes or other living arrangements. So now you have agencies who are very nervous about investing in real estate and running programs which require great infusions of government funding. You know how
complicated this can get. When the government and private agencies print up brochures and give lectures on all the help they will give you, remember its not an entitlement as was the education part. There is a lot of public relations hype involved but when you look for "where's the beef" it may be a long search.
So what is the prognosis, what can parents look forward to for living arrangements for their child? My general answer to this question is for parents to develop a dream for what they want for their child and then work to make it happen. There are no legal limits to what you can do, it's usually limited by financial considerations.
The first place most parents will look for is government run group homes or privately-run group homes with mostly government funding. These come in a number of varieties. There are IRA's ICF's level 1, level 2*, and so forth. Each has its own requirements and levels of funding. There may be long
waiting lists. Again, they are not entitlements like schooling was. You can't sue the government because they haven't placed your child somewhere.
* IRA is an Individualized Living Arrangement. ICF is an Intermediate Care Facility. Levels one and two are levels of certification by the government. The amount of SSI is dependent on the level of certification of the home where the disabled person is living. In the case where families get together and establish an uncertified home, none of this applies.
Another area, and one which is growing in popularity, is arrangements set up by the families with or without government help. The ideal arrangement is for the family to buy a home, set up a staff and program and keep the government out of it. If you are a Donald Trump this would be the way to go. This could require a funding stream of upwards of $100,000 per year in addition to the house, depending on the level of attention the person with autism reqiures. It gets better if three or four families get together on it. This arrangement would be a non-certified home, where you have to pay the property taxes each year. For families which are pretty well heeled and creative, this is a way to go. Another arrangement is for the families to take care of purchasing the house and then have the staffing and programming done by a private agency. Two years ago I put together a model for four families doing such an arrangement and outlined all the income and expense streams. I will send it to anyone who wants it, or can post it here on the Autism Community web site.
Let me tell you of some arrangements happening in my community. --
Families A, B. These two families each have a daughter with Down syndrome. The parents grew tired of trying to get their daughters into government run group homes, so they took things into their own hands. They couldn't even get weekend respite arangements made, the system is so overloaded. So the parents hired a lawyer and had themselves incorporated into a 503c corporation, i.e. their own little non-profit agency. They set their daughters up in an apartment of their own and hired a caregiver to live in the apartment next door. The caregiver goes over in the morning to help the girls get through breakfast and clean the apartment. The girls go off to jobs as does the provider. The provider is there in the evening to make sure the girls are getting their supper and get to bed. The provider goes
shopping with the girls for food and other needs. The caregiver is paid through the Medicaid HCBS waiver program. The reason for establishing the agency is that the government will not fund families directly, it has to be done through a non-profit agency.
Family C. This family bought a house for their autistic son. They brought in the son's non-disabled buddy from high school to live with him. They give this fellow free room in the house in exchange for looking after their son. They also rented out two bedrooms to university students to help with the mortgage and taxes. The autistic boy goes off to daily things with a provider paid for under the Medicaid HCBS program and the buddy goes off to his job. Recently the parents have set up a woodworking shop in the home and the autistic boy is making objects for sale.
There are many other arrangements taking place. One couple deeded their home over to their autistic son with the arrangement they can continue to live there with him. That way he is guaranteed a home when the parents pass on. Not sure if they are paying him rent or not. By paying him rent, they
can funnel money to him without jeopardizing his eligibility for government aid. In another arrangement a group of four families bought a house, moved their disabled children into the home, then turned it over to a private agency for operation as a group home, with the parents having some control.
There really is no limit as to what parents can do to set up living
arrangements if they have some money, imagination, and lots of
determination. Each case is different. You cannot generally copy exactly what another family did. There is no magic formula to follow. No step 1,2,3, etc. There is no agency that will set it all up for you. You have to take the lead and do the coordination. If you want someone to do it all for you, such as the government or a private agency, you get their standard
product, which may take forever and not really be what you want.
Here are a few ideas that I've given some thought to over the years in regard to living arrangements that I might want to consider. It's my goal to remain my son's primary caregiver & for us to live together as a family for as many years as possible. While that objective may not be feasible for everyone, it happens to be my personal preference and the following ideas reflect that goal.
In order to stay together as a family & have affordable care for my son, we could move into a duplex and have a caregiver live in the other half in exchange for providing care for him while I'm at work.
Or a caregiver could move into our home to provide care, but that would mean less privacy & space for everyone.
I could purchase a larger home, hire a caregiver and offer respite care to other autistic or handicapped adults (during the day only). Interested, responsible college students could be recruited to help out, thereby providing a better caregiver:client ratio. Parents could pay a reasonable, minimal fee, which would offset the cost of the caregiver(s) & hopefully make it more affordable for everyone. The purpose of taking in other autistic adults would NOT be for profit but rather to bring down the cost for everyone. Activities could be provided during the day. Everyone would be encouraged to participate in daily living skills & other tasks, such as gardening, painting and crafts, according to their ability.
Form a "co-op" with other parents of autistic/handicapped adults. Everyone could contribute their time, as well as finances, for the care of the kids. Each parent's financial obligation would be adjusted according to the amount of time they spent caring for all the kids in the co-op. Parents volunteering the most time would pay the least, while those spending the least amount of time would pay more. College students studying psychology, child care, communication disorders or other related fields could be recruited, hopefully as volunteers or as part-time caregivers. Other caregiver(s) could also be hired to fill in as needed.
Form an "Intentional Community" incorporating many of the ideas of the co-op. Members of the community could either reside in the same residence or a cluster of homes or cottages located on adjoining property. Parents of the autistic residents would be the primary caregivers. Services could be provided by outside agencies and individuals. All residents would participate in meaningful work and activities on the premises to facilitate the operation of the community. Work and activities outside of the community would also be encouraged and necessary for the financial operation of the community.
These are just a few suggestions - some more appealing or practical than others. If you would like to find out more about a community that was started just for adults with mental disabilities, visit the web page for Innisfree. A website on the topic of communities in general can be found at Intentional Communities. (Please note: both of these links lead to sites outside of this web page, so you might want to bookmark this page before you leave. You can also return here by clicking the "Back" button on your browser.) I have no personal knowledge of these particular communities - I simply found their web pages interesting & thought visitors here would, too. While these links are interesting, they are not related to autism.
One Mom's Concept of an Autism Community by Pam Marbaugh
I am the single parent of a nine year old boy (Tyler) who is HFA. I want to plan for the future. I first conceived of the idea of an intentional community when I learned of an elderly lady who had her developmentally disabled adult child living with her at the Lutheran Home. This is one of those continuing care villages where the mom gave them her estate for the guarantee of care for herself and her child until death. It gave me ideas about security - don't other families with children with autism know our kids better than anyone? Why not be together? Isn't there strength in numbers?? I am seeking ideas and answers....
More Community Links by Raynmom
The following links are outside of this website, please bookmark this page before leaving.
Many of the following links are not autism-related, however, anyone interested in forming a community for autistic people would find them informative.
Devon & Cornwall Autistic Community Trust - The DCACT is a Registered Charity and a non-profit making Limited Company formed in 1982. Since that time the organisation has grown to establish itself as one of the country's (UK) leading service providers for people with Autistic Spectrum Disorders (ASD). Now with a reputation for delivering an extensive range of very high quality services to people of all ages the DCACT continues to work towards the day when all people with ASD have their individual needs met with appropriate services.
Sandhill Farm (Community) is a family of friends. Being on the land is important to us. We grow our own food and farm organically. We feel a spiritual connection with the earth and with one another and celebrate the interrelatedness of all life. We get satisfaction from being able to do things ourselves, whether its making butter and cheese, repairing old machines, making our own entertainment or building our own buildings.
Cohousing is the name of a type of collaborative housing that attempts to overcome the alienation of modern subdivisions in which no-one knows their neighbors, and there is no sense of community.
It is characterized by private dwellings with their own kitchen, living-dining room etc, but also extensive common facilities. The common building may include a large dining room, kitchen, lounges, meeting rooms, recreation facilities, library, workshops, childcare.
Usually, cohousing communities are designed and managed by the residents, and are intentional neighborhoods: the people are consciously committed to living as a community; the physical design itself encourages that and facilitates social contact.
If you would like to submit an article to be included on this page or any other page of this website, please send your submissions in the form of an email to Autism-Community@usa.net
- The DCACT is a Registered Charity and a non-profit making Limited Company formed in 1982. Since that time the organisation has grown to establish itself as one of the country's (UK) leading service providers for people with Autistic Spectrum Disorders (ASD). Now with a reputation for delivering an extensive range of very high quality services to people of all ages the DCACT continues to work towards the day when all people with ASD have their individual needs met with appropriate services.
