The following is an excerpt from the written testimony I provided on behalf of not only AAPD but also three other national, cross-disability, non-partisan membership organizations - ADAPT, the National Council on Independent Living (NCIL), and Self Advocates Becoming Empowered (SABE) to the Senate Health, Education, Labor, and Pensions (HELP) Committee last month for the "Community Services and Supports: Planning Across the Generations" hearing on long-term care.

To read my entire written testimony, please visit our website  here . 

"...Perhaps the most important point I could make this morning is that every American is a stakeholder in today’s topic. There are currently 10 million Americans in need of long term services and supports, and that number is expected to rise to nearly 15 million by 2020.[1] These individuals are male and female, adults and children, with a broad range of disabilities represented. This is in no way a static population.

Disability civil rights laws start with the recognition that disability is a natural part of the human experience that in no way should limit a person’s right to make choices and participate fully in all aspects of society. Any person at any time can acquire a disability. Some people acquire disability as they age. By 2030, when the youngest baby boomers reach retirement, the population of those age 65 and older will nearly double to 71 million, comprising 20 percent of the American population.[2] Some people acquire their disabilities through birth; some through accident or injury; some through illness. Still others acquire disability while putting their lives on the line for our country. Traumatic brain injury has become the signature wound of the Iraq-Afghanistan wars, with estimates as high as 60-70% of all wounded returning vets having TBI.[3] This unprecedented population of disabled soldiers and veterans is expected to have ongoing needs for long term services and supports over the course of their lifetimes, with some recent reports suggesting the cost of care could be as much as $14 billion over the next 20 years.[4]

Given the diversity of the disability population across the age spectrum, our country requires a long-term care system that affords people real choice in how and in what environment they will receive the supports they need to live. This means a system built to work for all people without regard to age or disability. One that begins with the assumption that adults with disabilities want to work, children with disabilities want to learn and play with their neighborhood friends, and the vast majority of individuals in need of long-term services and supports would rather receive those supports at home with family and friends. One that looks holistically at people with disabilities and understands that long term care should be integrated with acute care services; that personal care attendants are a reasonable workplace accommodation; and that people should have freedom in choosing where to live and not be forced into certain types of housing in order to qualify for the supports they need to survive. Only a long term care system that is comprehensive in scope could satisfy the existing as well as impending demand for long term care that moves us away from our long legacy of warehousing people with disabilities – simply maintaining them so they can survive another day – and toward investing in them, with an expectation of return. Choice and control should be at the foundation of any comprehensive reform. Sadly, this vision of comprehensive reform is the complete opposite of what we have in place today.

Our current system of long-term care dates back to 1965, when the Medicaid and Medicare programs were first created.[5] Not surprisingly, given the origins of these programs, the system continues to exemplify the historically low expectations society has had for people with disabilities for decades. With the expectations for us so low, the mission of the old system was and remains to this day focused on simply maintaining people with disabilities in nursing homes, other institutions, and back rooms, outside of view and away from the mainstream. In 1965, people with disabilities were largely out of sight, because society was inaccessible, both literally and attitudinally. In 1965, states still had involuntary sterilization laws for people with disabilities. Curb cuts were few and far between. There was no Americans with Disabilities Act (ADA). It is 42 years later, and it is an abomination that hundreds of thousands of people with disabilities remain trapped in a broken system that steals lives, saps peoples’ spirit, and enriches service providers at the expense of disabled people and their families.

The existing long term care system in this country is shouldered almost entirely by family caregivers and public programs provided in institutional settings, in overly medical ways that are often unnecessary and needlessly expensive. Private insurance for long term care comprises only 3% of long term care spending, and a recent study showed that as few as 10% of Americans can even afford a quality, private long term care policy.[6] The rest of the population gains access to the existing public system by “spending down” to a poverty level which triggers their eligibility for Medicaid and in turn, the supports they need.

The government as well as the private sector has failed Americans in planning for the onset of disability. Everyone is paying for the inadequate, problematic system, and we are paying big ..."