A 1996 survey conducted by the ICR Survey Research Group showed that at least one individual in 20 percent of U.S. households is a caregiver - either part-time or full-time. Planning for the future280 of people with disabilities is something they and their families/caregivers must tackle - and the sooner the better.
Whether the person with special needs is 4 or 40 years old, it is imperative that families create a plan. Despite the growing number of persons with developmental disabilities in this country, less than 20 percent of families have done any planning.
Whether people with disabilities function entirely on their own or need assistance, a written directive can provide instruction for daily care, as well as unexpected and sudden contingencies.
- How would these individuals like to be bathed and dressed?
- What music do they enjoy, and when do they want to listen?
- Do they have special dietary needs and requirements?
- Who monitors their medication?
- What activities do they enjoy?
- How can they live with dignity, quality, self-esteem, and security?
Family members/caregivers should discuss information regarding the needs and desires of people with disabilities and compose a directive document addressing lifestyle, financial, legal, and government benefit issues.
Most people realize they need to plan and want to do something, but they fail for a variety of reasons. Some believe the task is overwhelming; they don't know where to find qualified professionals who understand their needs and how to resolve their concerns. And, too, the cost of professional services can be prohibitive. Families are also concerned with privacy issues. How do they overcome these obstacles and begin planning for the future?
As families begin their plan, they should first identify people who can assist in the planning process. This should include, when possible, the family, the person with a disability, an attorney, a financial advisor, caseworkers, medical practitioners, teachers, therapists, anyone involved in providing services, and a lifetime assistance planner to act as a "team" advisor to make sure that all parts of the plan are coordinated and complete.
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