The issues surrounding the support of an individual with lifetime special needs are complex and varied. There is no “one size fits all” model that can be used as a template as each person, regardless of the disabling condition, has unique needs and abilities. There is also the question of what “natural” supports already exist in the form of family, friends and resources.
The programs that federal and state benefits provide are valuable to all qualified individuals and form the financial and security foundation of most long term plans. The nature and structure of these benefits make it difficult to match the need with the supports available, creating a situation not always conducive to actually achieving the stated mission of providing help to those in need with dignity and a sense of self worth.
And, many of the programs actively eschew the natural supports and quite often penalize a beneficiary for their caregiver’s actions and support.
The outcome of such a confusing maze of services is that many qualified individuals, and their caregivers, are not receiving the support that might make positive and profound improvements in their lives. And, even after they are on benefits, the constant flood of communications from the varied sources make it very difficult to maintain equilibrium as to their current status. Even experienced advocates find it a task to keep up with the published regulation changes, and this doesn’t include accounting for the regional interpretations and application of those changes.
Where can individuals get help? There is a cottage industry of attorneys’ who advertise their experience; however, they are usually partial to those cases with large back payment potential. That leaves the single mother with a special needs child largely at the mercy of the “voice” on the other end of the telephone line. And even the most educated person will find it hard to cut through the clutter.
At this particular time it is not unusual for an initial applicant to wait six to nine months to process their file trough 3 levels of evaluation. If they are still not approved, it can take another year to get through levels four and five.
If you consider that many individuals must make application through several agencies to receive their full measure of benefits, most with different terminology and requirements, it is no wonder that 30% of eligible individuals never re apply after their first failed attempt.
Some recent statements from reputable sources about the state of our benefit programs are direct and damning:
The Eligibility Definition used by SSA needs to be changed.
David C. Stapleton Dir, Cornell University Institute for Policy Research
“Further, I have concluded that we have to make fundamental, conceptual changes to both how we define eligibility for economic security benefits, and how we provide those benefits, if we are ever to fulfill the promise of the ADA.”
A User’s Perspective on Federal Disability Data
by Martin Gould, Ed.D. Director of Research and Technology
National Council on Disability
"There are dozens of individual federal funding streams with varying and different eligibility criteria for program access. There is a patchwork quilt of policy and program initiatives that change when Administrations turn over, or that are outmoded – some dating to the 1960s and 1970s -- and uncoordinated. There are no specific or concrete national goals for people with disabilities in a host of critical areas of life.”
Issues in Medicaid Policy and System Transformation:
Recommendations from the President’s Commission on the Freedom Initiative
Stephen L. Day, M.S.W.
“For the longer term an opportunity exists to review the current patchwork of
Medicaid optional services and state-level variations and to consider a more
consistent national Medicaid benefit plan”
A Disability System for the 21st Century
The Social Security Advisory Board
September 2006 Report
“Our Nation’s policymakers need to acknowledge that the current disability programs, though well intentioned, are badly fractured and disjointed. A unifying point of vision, oversight, and management is desperately needed.”
“GAO’s research has found that these programs are neither well aligned with 21st century realities nor are they well-positioned to provide meaningful and timely support for Americans with disabilities. Solutions to these problems are likely to require fundamental changes, including regulatory and legislative action.”
It's time for a new plan for those with lifetime special needs and their caregiver's.