Family support is the priority of the family disability agenda

tour special needs family

At a visit to a neo-natal intensive care unit in a children’s specialty hospital, a baby, born three months prematurely, has undergone surgeries to save her life and has been nourished from the edge of life and death to a condition where she can go home.

Her single-parent mother has been by her side nearly every hour of every day since delivering her. She, too, has been well cared for, both physically and psychologically.

The physicians, nurses, and social workers have developed a home-based care plan for the baby. Together with parents of other NICU babies, they bid farewell to the baby and her mother.

Now what? For the baby, early intervention. For the mother, family support.

Just what is family support? Depending upon where the mother and baby live, family support consists of a modest amount of cash, vouchers for services, and direct services, both in-home and in-clinic.

Why family support? Why not? Is it better for the baby and mother to be together, or better for either or both of them not to be together? Is the birth-home a better place for the baby than foster-care or adoption? Better than institutionalization?

Today’s answers are clear, and they justify family support: Keep the baby and mother together, and support the mother to be able to care for her baby at home.

Below these answers and justifications lies yet a more fundamental one: Families are the core units of society. For that reason alone, they deserve support.

Associated with that reason is one that takes disability into account: the family that has a member with a disability faces extraordinary challenges and has extraordinary needs. To remain as an effective core unit of society, the family deserves extraordinary support. Disability is a difference that typically makes a distinction.

One part of that distinction relates to cost. No one likes to talk about rationing health care because of the costs, but cost considerations are central to the nation’s disability and health care policy. Costs are especially relevant in the lives of the family we have portrayed here. NICU costs are only part of the total; ongoing costs of health care and education loom.

Family support – modest transfers of money and services that the families may use in almost any way they want to keep their babies and children at home – is less expensive than other services. That’s because it “pays” the family to do what professionals otherwise would do – assuming public policy would endorse professional care for the baby and family in the first place.

More than that, the cash transfers allow families to decide for themselves just what they need and to spend the cash to get what they need. Family support advances family autonomy in making decisions; it makes families less dependent on professionals and their decisions. Family support is the family version of self-determination.

Now imagine that, after several years of benefiting from family support, the mother receives a notice from the state that she will have annually declining amounts for the next three years and that, three years from now, she will have no family support at all.

That kind of future should disturb us all. Yet, it is quite possible. Federal and state budgets are hard-pressed these days, health care costs are escalating, and, despite the pro-family rhetoric that emanates from Washington, D.C. and state capitols, family support is not nearly the priority it once was for Congress and the states.

Today, however, family support is moving to the front of the family-disability agenda. Why? Because federal and state support for family support has been waning. Because, in the Deficit Reduction Act of 2005, Congress has given states more discretion to use Medicaid funds as they see fit, and because home-and-community-based services under Medicaid constitute a large portion of federal-state family support; uncertainty looms, as does the possibility of great creativity.

Because in 2007 Congress will consider whether to reauthorize the Disabilities Assistance and Bill of Rights Act, which now authorizes federal family support programs. Because more babies are surviving. And because early intervention, early childhood education, and other services to children and families are demanding measurable outcomes, including those that family support seeks.

For these (and other reasons), the Beach Center on Disability, the Human Services Research Institute, The Arc, and the National Association of State Directors of Disabilities Services convened a national symposium on family support in Lawrence, Kansas, in January, 2006 to review the state of family support in the early years of a child’s life.

The summiteers adopted a Consensus Statement that follows this article. All of us will be advocating for family support. We will use the reasons the Statement gives and target their efforts on the policy-leaders whom the Statement identifies.

Are you willing to join us? What if you, a member of your family, or a close friend were the mother we described above? Or her partner or relative? What if you yourself were that baby and are now a NICU-survivor who has a disability?

Beyond Support To Control of One’s Life: A Consensus Statement on Family Support

Families are the core unit of society and advancing their quality of life and power to control their destinies is consistent with long-established constitutional principles of family autonomy and personal liberty.

Families who have relatives with disabilities living at home face extraordinary challenges related to the individual’s disability and the family’s capacity to provide support.

“Family support” consists of a variety of supports, including cash assistance, professionally provided services, in-kind support from other individuals or entities, goods or products, or any combination that are provided to families who have minor or adult members with disabilities living in the family’s home.

“Family support” enables families to provide needed support at home, and assists them to stay intact, enhance their quality of life, be included in their communities, and guide their member with a disability toward achievement of the nation’s goals for people with disabilities or special needs.

“Family support” policies and practices are more effective when the family and the individual each have the right and opportunity to control the use of funds and determine what and how they are served.

Autonomous, empowered, self-determined individuals come from families who are also autonomous, empowered, and self-determined.

“Family support” effectively improves the lives of people with disabilities and their families.
Families’ needs for support services are increasing, but the public resources have remained stable or in some cases have been reduced.

The Congress of the United States, the Commissioner of the federal Administration on Disabilities, other appropriate federal agencies, and other national policy leaders; State Legislatures, State Directors of Disabilities Services, and other state policy leaders, The National Governors’ Association, the National Council of State Legislatures, and other relevant members of disabilities services networks

To advance, establish, and sufficiently finance family support policies and practices that are designed to achieve the goals of family support, and enable families and individuals to control their lives and the supports they receive.

Disability resources

Disabilities Online Directory - Disabilities Online directory of information on disabilities a - Disabilities-Online is a directory of information available on the World Wide Web for people with disabilities or special needs, their families and friends

Disability Matters Ltd - Provide high quality and innovative services that enable clients to value disabled or special needs people as customers and colleagues

Invisible Disabilities Advocate-Chronic Illness - IDA creates a better understanding of chronic, debilitating illness with articles, a booklet, links, a message board, nutritional information and more!

Promote Awareness- Improving the Public's Perception of People with Disabilites - Offering a wide variety of services and products designed to inform and educate businesses, families, educators, members of the medical profession, and the general public about the abilities of people with disabilities or special needs

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