Stem Cell Research

President Obama has signed an Executive Order allowing federal funding to be used for embryonic stem cell research – which will greatly enhance research that shows high promise for many conditions including spinal cord injuries and disorders. United Spinal Association will closely follow the National Institutes of Health as it develops guidelines for this research. So that a future President may only reverse the order with Congressional concurrence, United Spinal Association also supports legislation by Representative Diana DeGette (D-CO) (HR 873) that is similar to legislation passed overwhelmingly in the last Congress but vetoed by President Bush. Another bill, HR 877, would put severe restrictions on stem cell research. On the research side, the FDA recently approved clinical trials (not using federal funds) for embryonic stem cell treatment for spinal cord conditions at a facility in California.
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Health Care Reform

Health care reform will be a high priority for this Congress and the Obama administration. There is a consensus among both Democrats and Republicans in Congress as well as stakeholders that health care reform must be addressed. Senate Democrats have taken a lead in the effort. Senator Max Baucus (D-MT), Chair of the Senate Finance Committee, released a white paper in November outlining health care reform. Senator Kennedy (D-MA) and his staff are also developing a broad health care proposal.

Long Term Services and Supports (LTSS). Disabilities and aging groups are advocating that health care reform include LTSS in the home and community. The Consortium for Citizens with Disabilities (CCD) and the Leadership Council of Aging Organizations jointly developed principles to this end.

Comparative Effectiveness. There is consensus that it would be beneficial for health care to have research into what treatments and strategies are most effective for various conditions and to disseminate this information to health care professionals. The economic stimulus package (HR 1) includes $1.1 billion for comparative effectiveness research. On the other hand, there is concern that the result may be that only certain treatments and strategies (those that work for a majority of people) will be covered by health insurance or government health programs. If so, people with disabilities and chronic conditions may not receive the individualized care they need. This issue requires vigilance by disabilities advocates.

Prevention. Preventive care and measures are another key element of health care reform. Senator Tom Harkin (D-IA) is leading the Senate HELP Committee’s effort on health care reform and prevention. As a key to prevention, it is important that medical equipment be accessible for people with disabilities (e.g., examination tables, diagnostic equipment such as for mammograms). Senator Harkin had a bill in the last Congress (S. 1050) that addressed the issue in part. The bill has not yet been reintroduced in the 111th Congress.

Eliminate the Medicare 24-Month Waiting Period. Under existing law, when a person with a disability is determined to be eligible for SSDI and other Title II Social Security benefits, s/he is eligible for Medicare – but only after a 24-month waiting period. Senator Baucus’ white paper calls for phasing out this waiting period over several years. Given the uncertainty about what health care reform will ultimately do, stand-alone legislation will soon be introduced by Representative Gene Green (D-TX) and there is an active coalition supporting this legislation.

Competitive Bidding. In July of 2008 Congress voted to delay DME competitive bidding for 18 months until January 2010 and to exclude complex rehabilitation (including some classes of power wheelchairs) from competitive bidding altogether. Congress mandated competitive bidding for DME to be covered by Medicare in the Medicare Modernization Act of 2003. There is a push among manufacturers and suppliers to modify and/or eliminate the competitive bidding program. CMS has included Class III power mobility devices in the next round of competitive bidding. In the first round of competitive bidding for DME (since withdrawn), consumers would have had access to far fewer providers of DME to Medicare beneficiaries and providers would have taken a severe cut in payments.

First Month Purchase Option. As a cost-saving tool, some members of Congress are proposing that Medicare should not cover the purchase of a wheelchair for consumers but rather wheelchairs should be rented for 13 months. This is a serious concern because consumers need customized equipment to meet their needs, and customization is much more challenging with rented equipment. It is expected that the issue will come up when Medicare is addressed this year in legislation addressing physician payments.

In the Home Rule. Current Medicare regulations allow Medicare to pay for power wheelchairs only as they are needed for a person to function in their home. This rule often prevents people from obtaining the wheelchair they need to maintain independence and stay in their communities. Congressman Langevin (D-RI) will soon re-introduce legislation to abolish this misguided CMS regulation. The cost of the legislation is unknown. There is a concern that the increased costs will be substantial f this legislation creates a “woodwork effect” whereby eligible people who did not previously apply to receive a power wheelchair would apply after enactment of this legislation.

Insurance Coverage. . Many health insurance policies have lifetime limits (e.g., $1 million) that are often exceeded by people with SCI/D, thus forcing them to impoverish themselves to qualify for government programs or go without important health care. Increasingly, many health insurance policies also limit rehabilitation to 30 days (or even less), which means that many patients are discharged without sufficient rehab and training for adjustment and proper fitting of wheelchairs and seating systems, for bowel and bladder care and for other essential activities. In addition to failing to maximize health and independence, the result is that people are at risk for additional medical complications. Health insurance policies often have unrealistically low limits on coverage of durable medical equipment (DME). Typical examples include (i) a $1,500 DME limit when even a basic manual wheelchair with necessary cushion, back and safety accessories typically costs several thousand dollars; and (ii) no coverage for bathroom equipment necessary for toileting and bathing. Health care reform should include providing for these kinds of medical needs.

Christopher & Dana Reeve Paralysis Act

This act was included in S. 22, the Omnibus Public Land Management Act of 2009, which passed the Senate and awaits House action. The act would authorize the Secretary of Health and Human Services to direct research on paralysis. It would also authorize up to $25 million per year through 2011. (Note: It is a victory to secure authorization, but appropriation of actual funds requires additional Congressional action.)

Community Living Assistance and Supports, CLASS Act

The CLASS Act was introduced in the 110th Congress by Senator Kennedy and others. The legislation would create a national insurance program to be financed by payroll deductions to provide services to assist people with activities of daily living to stay in their homes. The proposal requires that a person work a number of quarters and pay into the system for five years. People would not be required to impoverish themselves in order to qualify for benefits. Senator Kennedy is expected to reintroduce this legislation this year. Recent private scores have found this legislation to be cost-neutral, but the Congressional Budget Office has not yet weighed in on the cost.

Community Choice Act

Senator Harkin and others introduced bills in the last Congress to make it a Medicaid mandate to provide coverage for community-based attendant services and supports for Medicaid-eligible individuals. These services include activities of daily living, financial management, and meal planning, shopping and preparation based on a functional needs assessment and plan. Similar legislation is likely to be introduced in March or April this year. While similar legislation has been introduced in every Congress since the early 1990’s, its high cost is an impediment.

Empowered at Home Act

Senators John Kerry (D-MA) and Charles Grassley (R-IA) have reintroduced this bill as S. 434. It would amend the Medicaid program to improve the home and community-based services (HCBS) option to encourage more states to provide the services to eligible people. The bill builds on the state option created by the Medicare Modernization Act whereby states were able to have HCBS as part of their state plan rather than as a Medicaid waiver program.

Homebound Rule

For those receiving in-home care under Medicare, rules limit eligibility to people who do not leave their homes except in very limited circumstances. Past efforts to overturn this rule have been unsuccessful, but there may be more chances of success in the new administration.

Medicare

There will be a Medicare bill again in this Congress, if only to fix the perpetual problem of physician payments. This bill is likely to raise many issues that will merit active support or opposition by disabilities advocates.

Social Security Disability

It is essential to remain vigilant about the tragic backlog in disability determinations. In bad economic times, many seniors and people with disabilities who lose their jobs and cannot find another apply for Social Security benefits. The result is huge surge in benefit applications which — without more money – would exacerbate the already tragic delays in processing disability applications. In the economic stimulus bill (HR 1), Congress appropriated $500 million to process the surge in applications, including funds for electronic medical records, as well as additional funds to replace Social Security’s antiquated National Computer Center. Without a major computer overhaul, Social Security would be unable to accept any more data as early as 2012 – which would be disastrous for people who need retirement or disability benefits.

United Spinal Association continues to be active on a number of additional Social Security issues including concerns about the application and appeals processes.

• Transportation, including accessibility of Amtrak and accessible taxis
• Employment and Training, including work incentives for those receiving Social Security disability benefits
• Rights, including voting rights and implementation of the ADA Amendments Act
• Housing- accessible and affordable

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