Life Services for the Handicapped
Life Services offers parents a satisfactory answer to the question, "Who will look after our child when we are gone?"
This program was designed in 1988 by a group of human service professionals, clergymen, parents and business people, who had become acutely conscious of the problem of care for older disabled people. Determined to do something about this, they founded the national non-profit organization, Disabled and Alone/Life Services. www.disabledandalone.org
“The problem of care for older disabled people, usually by their aging parents, is a situation found in all industrialized countries. This problem is new to all of us, since it is the first time in the history of the world that disabled people and their families have lived so long. Now, an 80-year-old mother caring for a 50- or 60-year old mentally retarded son or daughter is no longer improbable or even unusual.
“What is desperately needed are humane and affordable models of service which can be duplicated. We believe Life Services is well along in creating such a model.” -Les Park, previous executive director of United Cerebral Palsy of New York.
Parents who have children with disabilities are usually their children’s primary advocates. At each stage of their child’s life they monitor programs and progress, and pursue strategies for their special needs. Parents experience continuing pressure, because special needs and service programs change, and they learn that they must advocate continually for their child in every area of their lives.
As parents grow older and have to confront the realities of their own aging, they realize how difficult it is to ensure an appropriate future for their disabled child. Some parents have a family member or a special friend who will become the advocate, when they are no longer able to do so.
However, many parents acknowledge that such an individual may be unable to be an active advocate for the lifetime of their children. For many families, there are no individuals or organizations on which parents can depend to assure quality of life in the future of their disabled loved ones.
Disabled and Alone/Life Services for the Handicapped (EIN 13-3530656) is a nonprofit, tax-exempt (501(c)(3)) organization governed by a volunteer board of directors and established to provide families with an answer to the question: Who will look after my disabled child when I die? Developed and refined over the last 18 years, this program responds to a widely held deep concern about the future for individuals with disabilities without parental advocates.
People with disabilities are living much longer. This change presents a challenge to families and state and federal governments and is also compounded by lack of suitable housing and the closing of institutions for the disabled. In addition, there is growing inadequacy and decrease of real dollars for programs such as SSI and other services designed to assist people with disabilities. Often there is insufficient support with assistance in the home of a family with a disabled member who is taken care of by aging parents.
The primary objective of Life Services is to help families do sensible planning for and with their disabled son or daughter, anticipating the time when the family will no longer be here to help them.
Disabled and Alone/Life Services for the Disabled, will:
- Assist parents to do sensible planning for and with their disabled sons or daughters, in preparation for when they are no longer be able to care for them,
- Provide advocacy and oversight after the death of the parents, with written instructions about the special needs of the person with a disability,
- Advise families, attorneys and financial planners, and conduct educational programs throughout the United States about “life planning for a person with a disability.”
Each disabled individual being served gets a local Personal Advocate to perform two key functions:
- Work directly with the individual’s family, developing a plan for the future of their loved one.
- Serve as the lifetime advocate for the person with disabilities when the parents die or are unable to fulfill the role.
This “matched” professional helps complete the Planning Journal and becomes well acquainted with the family and the disabled individual. During the planning period, the family creates or identifies an asset to pass on to the disabled member and develops a well thought out plan to benefit him upon the death of his parents.
In most cases, the staff and volunteers representing Life Services are seen as “members of the family,” an important consideration when the parents or primary caregivers die. It is not strangers, but known friends, who are there at this traumatic time.
Roslyn Brilliant, Executive Director of Life Services, says, “Each person with a disability is very different, and every family’s circumstances are so unique that there can never be a ‘cookie cutter’ approach to meeting needs. We enter the lives of our disabled clients with understanding and work at becoming real life-long friends. It is a challenging and extremely rewarding assignment.”
After the initial membership/planning period, Life Services may
- Stay “in touch” with both the disabled individual and his family until the death of one or both parents when, according to the plan, the assets left by the family are used to maintain and enrich the life of the disabled individual.
- Begin a service program while parents are still alive.
The future is unknown and no program can offer a guarantee. However, Life Services offers parents the opportunity to plan for their children, addressing the need for individual advocacy for a disabled individual when the parents are no longer able to provide it. The organization regularly conducts its own fundraising activities to supplement funds contributed by parent members. To join the program, families pay a one-time membership fee and begin the planning process with a local Personal Advocate selected by the family and the organization.
There are now over 40 working professionals in nine states actively employed as Personal Advocates for Life Services. Paid on a per diem basis by Life Services, these Personal Advocates are the key to the success of this program, all accomplished without a penny of government money. Organizations in Australia, Great Britain, and India are now setting up similar programs modeled on Life Services.
Parents who wish to do affordable long term planning for their disabled family member(s) and who have assets to leave them, are encouraged to contact Life Services for more details, as are working professionals who wish to offer their services as Personal Advocates.
National Office
61 Broadway, Suite 510
New York, NY 10006
Tel:(800) 995-0066
Fax: (212) 532-3588
Southeast Regional Office
921 Rockledge Drive
Rockledge, FL 32955
Tel:(800) 660-0054
Fax:(321) 636-5821
Website: www.disabledandalone.org
Email: info@disabledandalone.org
Contents of this article were reviewed and approved by Roslyn Brilliant, Life Services Executive Director.
