Making the decision to care for a disabled adult is a life altering resolution to an already difficult situation. Weather a sibling or non-family member, the decision to become a caregiver for a disabled adult means change. Once, a mother of a disabled child once said it was like learning to live in Holland. In a lot of ways, her comparison was valid. As the parent of a disabled child you learn a new language and how to live in a completely new environment with a new focus in life. Every choice made reflects “what’s best for my child”.
When you make the decision to accept responsibility for a disabled adult, it mirrors many of the same issues. The only trouble is, the inroads made over a lifetime of care giving by parents are not automatically transferred to the new care giver. State, county, and local contacts for assistance programs are seldom passed along. Dealing with waiver and support programs can be confusing and at times, a gauntlet most people find impossible to manage. That said, if a caregiver you must be, then first face some facts. You’re moving to Holland and your life is changing.
CHARLOTTE
My experience is in Texas and that said, I will refer to state specific issues. Each state will have similar initiatives; some will provide better programs, while other states will offer little in supported services. First do an Internet search of state services.
http://www.ssa.gov/
[http://www.dars.state.tx.us/]
http://www.thearc.org/NetCommunity/Page.aspx?&pid=1400&srcid=183
http://www.hhsc.state.tx.us/Medicaid/contacts.html
[http://www.workforcelink.com/html/txrehab.asp]
http://www.acf.hhs.gov/programs/pcpid/index.html
Use your state as the source and search for disability services. In the search engine text option use words; “Your county” Your State” Disability, Rehabilitation, Services. Then Search. If disabled, most adults qualify for Social Security Income (SSI). It’s not much assistance financially, but with it the disabled adult qualifies for Medicaid. That covers some financial assistance and medical insurance. That’s basics but we all know, that’s not the ultimate goal.
This is the time to get real investigative. As you well know, individuals with a disability have varying developmental levels. You’ve stepped up to the plate, so realistically, where do YOU want to go from here. More is better when it comes to independence but always keep in mind each person’s limitations. For this article, I’m assuming there is a degree of independence possible. Self care and communicative skills are required to move beyond custodial care and into the world of community integration. All things considered, you must be the judge of the disabled person’s ability to learn job skills and integrate socially. Training time is not important. Weather it takes a week or a month, learning a skill is the key. Rule of thumb, if a disabled person can keep the house, his room and bathroom clean, than he can be a dining room attendant at a fast food restaurant. If the disabled person conducts themselves appropriately in social settings, they’re ready for community integration.
Find a program. Make calls. Don’t stop reaching out. The Internet is the best possible search tool. Don’t stop until you find a program that fits your disabled adult’s needs.
Persistence is important. Sign up for every qualifying program, don’t stop calling until it’s active and finally and foremost keep good records. Use an expanding file folder, make a file folder for each program, save correspondence, make copies of letters and forms you send out and keep notes on every verbal and telephone conversation.
It’s hard to imagine administrators of programs could possibly be selective in application of policies but it happens all the time. If a program has a waiting list, ask the number on the list. Call back every few months and make someone provide a status. Get names. Be able to tell the next person the history on a subject including dates and who you spoke with.
Last but definitely not least. Join a support group. Association of Retarded Citizens (ARC) is a national organization. The ARC has social events for the disabled, caregiver training and state government inter-action and advocacy programs.
Caregivers for Disabled Adults
Charlotte Hoaks is the mother of a disabled 34 year old adult. Her son is currently working 15 hours a week at Wendy’s as a dining room attendant and has an active social life with family and ARC friends. As a single parent of a disabled child, Charlotte has learned by trial and error about navigating the “system” and living in Holland. Her favorite response when asked about raising her son alone: I didn’t put it on my list during high school career day, but I wouldn’t have missed it for anything. I’m the woman I am today because I raised a special person. He taught me strength, compassion, and peace of heart.
ARC information: http://www.thearc.org/NetCommunity/Page.aspx?&pid=183&srcid=-2
CHARLOTTE
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