Scoop Essentials: Finding The Perfect Digs
Recently we brought you Scoop Essentials: In Search Of Home Sweet Home, a conversation about finding the right living situation for people with disabilities with Mike Mayer and Derrick Dufresne, senior partners with the consulting firm Community Resource Alliance.
Now, Mayer and Dufresne are back to answer your questions about identifying an appropriate residential environment, transitioning to independent living and finding support to make it all happen.
Our 27-year-old son with autism and cognitive disabilities loves his home and family. He’s a “house cat” and enjoys spending time at home. How can we make the transition to a home of his own go more smoothly when the time comes? Thanks. — Nancy, 56
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Mike Mayer: Slowly! Seriously, this can be a very difficult transition for people who have disabilities, especially if autism is among his challenges. Now, it’s important that what is designed for him is something he will like — not something that is a generic “autism” program — and especially not something that makes him fit into a group. The more people that he trusts that are a part of this process, the easier it will be. Allow him to see the home as his and make it a place he wants to be and the transition will be much easier.
Derrick Dufresne: In our experience, the three most important words for success are practice, practice, practice. We believe it is critical that people with disabilities bump into five new people a day. This can be at school. It can be in the neighborhood, at church, shopping, etc. The most important thing is to focus at this point on the process of the connections rather than outcomes. It is critical that people with disabilities understand that not everybody we need likes us, thinks we’re funny or wants to be around us. The law of averages tells us that the more people we bump into, the more likely it is that we will improve our social skills, model other behavior and learn the skills that we need to survive and thrive in the community. Your own parenting and support is invaluable as your son goes forward.
“Find a group of interested people who are willing to sit down and brainstorm.” You hit the nail on the head — where are these people? How can I find a couple of roommates for a very high functioning, but not able to live totally by himself, son? I have contacted so many agencies, networked like crazy, even started a support group through Meetup.com for autism and Asperger’s thinking I would find one parent with an adult child in a similar situation. For two years now, I have not been able to locate one, so I would love some other suggestions on how to find these families. Thanks. — Sue Lowery, 55
Mike Mayer: I suggest that rather than looking for parents of children who have a disability, develop a circle of friends — your friends, people who know and like him and you. Ask them to brainstorm with you. I suggest you contact the developmental disabilities council for your state and ask to talk to someone about your situation. They often have connections in every corner of the state that they can connect you with. Also, there is a group called Arclink.org that works to find roommates for people like your son. You can connect with their roommate service by clicking here.
Derrick Dufresne: Think about where most people meet people. Most of us meet people where we live, work and play. Does your son have any hobbies? There’s obviously a tendency to think about the commonality being the disability. We would ask that you look beyond that towards his interests and likes/dislikes. Also recognize that for some people it may take bumping into hundreds of people in order to find even one person that clicks. Your best hope is to continue having him bump into at least five new people a day to expand his contacts.
I have a set of twins (17-years-old) who both have cerebral palsy. Both require help for all self-care. Neither one is able to walk or assist with a transfer. Both are in power wheelchairs. One has a significant learning disability and the other does not. What kind of housing options are out there for my boys? — Kari Kerbel, 42, Dousman, Wis.
Derrick Dufresne: It is important to recognize that the housing options for your sons are the same as they are for the general public. It is important to separate out the issues of housing and support. No one should have to live in a certain type of housing because they require a certain amount of support. The key is to require integrated housing options that meet the needs of your sons for accessibility and livability.
The separate issue that needs to be considered at the same time involves the level supports that your sons will need. These supports can be provided anywhere in the community. The key to their success will be the relationship developed between the support givers and the individual. The key is to have people around them that care for them and will encourage them to become fully included in the community where they live.
Mike Mayer: The options in Wisconsin are probably better than in most states. I suggest you contact the Wisconsin Council on Developmental Disabilities or the Disability Advocates Wisconsin Network (DAWN) to discuss what is available for them as of now. I also encourage you to discuss developing individual options that are designed specifically for their needs rather than just using traditional group home type services. It may take a little more work and time on the front end, but it is our experience that these tend to be more stable situations over time and people are happier with these options.
My daughter is developmentally disabled and has expressed a strong wish to live in close proximity to her friends who are similarly disabled. Her friends are like-minded in this regard. What we have in mind is something like those amenities available here in Florida to those who are say, 55 and older, who choose to live in communities with others who share some of their interests and enjoy similar activities. This is not by any means a lock-down situation. Though there will be dining available — like a clubhouse — nothing is mandatory and people can come and go just like any typical community. We have been told that if they do move into such a community together, that would mean it is an “institution” and not community-based and therefore they would lose their home and community-based waiver funding. How do we stop “agencies” from abusing their positions by squashing the rights to choice that every other citizen has? — Lucille P., Boca Raton, Fla.
Derrick Dufresne: We hear this question numerous times. In our society, there are clearly choices that people make for which there is no public funding available. The fact is that grouping people according to disability separates people and has been determined not to be current best public policy. We can debate whether or not this choice should or should not be available. That is different than whether or not public money should be spent on this choice.
Why is it so hard to find listings of group homes for handicapped children. If placement of a child becomes necessary, there is nowhere to look for home listings so a search can be made for an acceptable one. — Mavis Torres, 72
Mike Mayer: My first suggestion is that you find out if there are supports that could be available to you in your home to help you support your child at home. There are agencies across the U.S. that do work with children in foster family type settings. Your state disability authority should be able to give you some information about these agencies. Once you find an agency you like then you need to work through the nature of the relationship you want to have with them, the foster family, etc. and begin the search for a family that meets the criteria you have agreed upon.
Derrick Dufresne: We believe in the principle that all children should reside in a home. If not in their natural family home, then in the home of a loved one. Many times we find that placement is necessary because the parent received little or no support to keep the child at home. We do know that children who grow up in placement are more likely to remain in placement as adults. Anything that can be done to keep the child home, or have the child grow up in another typical home, will only assist the child when he/she becomes an adult.