Independent Living (Part 3)

Advocate, Community Participation, Disability, Family Challenges, Inclusion, Independent Living, Parents, People with Disabilities No Comments »

The American Disabilities Act proclaims that all persons with disabilities are entitled to independent living. Just as families have different needs and resources, independent living can be provided in different ways. In previous blogs we have examined state institutions, a private residential institution, and the abundant living situation of a young woman making her home with her mother. Another alternative is the group home, designed to serve children or adults with disabilities. Such homes usually have six or fewer occupants and are staffed 24 hours a day by trained caregivers.

Although most group homes provide long-term care, some residents eventually acquire the necessary skills to move to more independent living situations. The development of group homes occurred in response to the deinstitutionalization movement of the 1960s and 1970s. They were designed to provide care in the least restrictive environment and to integrate individuals with disabilities into the community.

Since the passage of the Community Mental Health Centers Act in 1963, grants have been available to group homes. Although state and federal funds continue to support the majority of group homes,  some homes operate on donations from private citizens or civic and religious organizations. Unfortunately, the number of available group homes has not always matched need.

One of the goals of group home living is to increase the independence of residents. Daily living skills include meal preparation, laundry, housecleaning, home maintenance, money management, and appropriate social interactions. Self-care skills include bathing or showering, dressing, toileting, eating, and taking prescribed medications. Staff also assure that residents receive necessary services from community service providers, including medical care, physical therapy, occupational therapy, vocational training, education, and mental health services.

As with any type of organization, some group homes are better run than others. Factors that contribute to group home success are a small staff-to-resident ratio, well-trained staff, and a home-like atmosphere. Before considering group home placement, extensive planning should be conducted. The individual’s strengths should be incorporated into the plan whenever possible. For example, if a supportive family is an identified strength, the preferred group home should be close in proximity to facilitate family visits.

Sometimes, when a group home or other desirable facility is not available, devoted and energetic parents and volunteers elect to build a suitable home for people with disabilities in their families or community. Our next blog will introduce a parent whose efforts are endless in developing an independent living situation for her son and others.

A Special Message

Courage, Family Challenges 14 Comments »

This blog was written by my daughter, Billy’s sister, Mary de Wit.

Words are venerated in my family. We attempt to use them with precision, whether writing or brainstorming or popping puns like shuttlecocks across the table at each other. They are electrically charged and elicit visceral responses, and we are sensitive to alternative word uses.

This summer, I watched five boys play baseball. Their voices were isolated and magnified by a leggy hedge and the gloaming. “Hit the ball, ree-tard!” yelled one of them. I cringed. We never said retarded in a pejorative sense at our house, where the word indicated a badge of courage, a moniker of challenge. “Retard” was the local pronunciation for no longer working your job of twenty-five years. And retarded was carefully used as a synonym for slow. Progress may be retarded, but still made.

The word “special” holds high voltage with us. If you were called special around our table, you may have had Down syndrome, or you may have received all A’s on your report card. You may have made it through a rigorous Freshman semester at the Citadel, or conducted an oxygen exchange experiment with frogs. You may have sold a million dollars’ worth of insurance in a month. Or maybe you raised four children, taught Kindergarten and commuted to a university to earn a degree. All of those things were considered special.

Our family was bound together with low-tack adhesive like masking tape. Occasionally realigned, changes left historical records in batik-like patterns after the paints spattered with each move, each project, each endeavor. It takes time. The process is sometimes retarded by circumstance. The outcome is special: a work of art.

When Snow Comes to Kingsport

Employment, Family Challenges 4 Comments »

We have a steep driveway. When the house was being built, people asked me, “What will you do when it snows?” I replied, “I’ll stay home.” Billy does not like snow because he has a fear of falling, based on an experience when we had a deep snow in North Carolina. Our friend Michael offered to drive him home from work one evening last week when I was unable to navigate our driveway. He put Billy out at the top of the hill; I was watching from the open garage door. Billy promptly slipped and landed on his behind. As he panicked, I suggested that he slide down on that largest part of his body. He slid into home while both of us laughed!

This morning, with renewed snow and impassable roads, Billy and I sat with our coffee watching the snow falling and contemplating our strategy. We finally determined that we would have to call Food City and inform them that Billy would be unable to work today. The phone rings: our friend visiting next door, our friend who has a four-wheel drive car, called to ask if we needed anything since he was going to the store. Billy was delighted to have a ride because he knows they really need him on such a day. Then Jos called to say he would pick Billy up tonight and bring him to the back door rather than the driveway.

So here we are: two rather fragile people with a steep driveway, with remarkably kind friends and family. God is good.

With Billy at work, I have several options. I can finish putting away the Christmas decorations, write thank-you notes, or I can take a nap. Care to make a guess?

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