National Council on Independent Living

The National Council on Independent Living

PEOPLE WITH DISABILITIES AND SOCIAL SECURITY REFORM

The National Council on Independent Living (NCIL) is a national membership association for people with disabilities and centers for independent living (non-profit, community-based, non-residential organizations that are run by and for people with disabilities). NCIL is a cross-disability, grassroots organization run by people with disabilities, with a straightforward advocacy agenda: the full integration and participation of people with disabilities in our society.
Millions of children and adults with disabilities in this country receive Social Security disability insurance and Supplemental Security Income (SSI) benefits. These benefits and the health care coverage that comes with them -- are essential to our health, independence and very lives. One of NCIL's top priorities is Social Security reform, including the improvement of Social Security's work incentives programs. NCIL's Social Security Subcommittee, and hundreds of NCIL members, have worked tirelessly with the White House, Congress, and the Social Security Administration to eliminate barriers that currently prevent many of us from entering the work force.
When talking about Social Security reform and solvency of the trust fund, we are not only talking about retirement benefits. Social Security also provides income -- and critical links to health care -- to millions of workers and dependents with disabilities. One of the President's five core principles guiding reform is that the Social Security system must continue to provide financial security for Americans with disabilities. Yet virtually none of the media coverage on Social Security reform, or the public discussions at the bipartisan forums held around the country this year, have included this aspect of the President's plan. This must change in the coming year. Americans with disabilities, and the disability insurance program, are essential elements - not just a footnote -- to the solvency discussion, reform proposals and solutions.
People with disabilities know first hand that the issues surrounding solvency of the Social Security Trust Fund are complex. It is easy to get lost in the discussions of privatization, redistribution aspects, and private capital markets. But the one thing that we cannot lose sight of are the very real lives that will be affected by any changes. The solutions and changes must be crafted carefully, with the continuous participation of the disability community. Discussions, proposals and recommendations about Social Security solvency must include the Social Security Disability Insurance (SSDI) program, and must include meaningful dialogue and feedback from those who have first hand knowledge of the strengths and weaknesses of the current program. We have significant knowledge and expertise to offer the Administration and Congress as they work on these issues.
NCIL respectfully recommends that the President and Congress consider these guidelines and recommendations as they continue their Social Security reform and solvency work next year:

Make no decision about us without us. One of NCIL's guiding principles is that of consumer control, defined as vesting power and authority of a particular program in the consumers who are served or who benefit. The dialogue and work in the coming year about Social Security reform must include, at every step of the way and in every discussion, disability insurance benefits. This means the President and Congress must be committed to encouraging and seeking active participation from the disability community, including individuals who are receiving disability benefits. President Clinton has said that the broad-based participation of the American public is critical to achieving a resolution of the long-term solvency issue. Consumers of the disability programs must play a pro-active role in policy development and implementation in both the specific SSDI discussions and in the larger Social Security solvency discussions.

Look at the changing relationships between work, disability and retirement. The nature of work and disability in this country has changed drastically since the SSDI program was enacted. Thousands of people with significant disabilities work today because of advances in technology, education, law and public attitudes. Most Americans are living longer and healthier lives. Social Security reform must consider these changes and the interrelationship of these factors.

Re-examine the definition of disability and the all-or-nothing nature of the current disability programs. If real reform is to happen in the area of disability insurance, we must begin to look at ways in which SSDI can become a transition, not a dead end. For people with disabilities to be truly part of mainstream America, and to truly live independently, we must develop a new way of looking at disability income support.

Coordinate changes in Social Security with other entitlements for people with disabilities and elders, including SSI, Medicare and Medicaid. Any major changes in the SSDI and retirement systems will have a significant impact on other related entitlements. These interrelationships must be looked at and factored in to the reform discussions and proposals.

Start now to reform the Social Security work incentives programs. The existing work incentives, intended to help people get off of the SSDI rolls and back into the workforce, are complicated and outdated. Many of us who try to use them find that they often actually function as disincentives, penalizing people who want to go back to work. Going back to work can mean losing the prescriptions, assistive technology, personal assistance, and health care that people need to keep healthy and live as independently as possible. These are the depressing realities of the existing work incentives. Legislation addressing our concerns was proposed last year in the House and Senate but was not passed. New legislation will be introduced again this year to begin to address these disincentives. We urge you to support those efforts and include them in your overall reform plan.

Work together -- with us and with each other. Americans are tired of the extreme level of partisan bickering we've seen this year. We know this Administration and Congress are capable of coming together in a bipartisan way to create strong, creative solutions. We need you, our leaders, to work with us and for us not against each other.

NCIL applauds President Clinton's commitment to strengthening the Social Security system. We are honored to be invited to the first White House Conference on Social Security and expect it will be the first of many opportunities to work with the President and Congress on bipartisan reform of the Social Security system.