Spinal Cord Advocates is working on a number of critical public policies that are important to people with spinal cord injuries and disorders and other disabilities, including:
Durable Medical Equipment (DME) – including wheelchairs
- Medicare Competitive Bidding for Wheelchairs and other DME.
As a cost-saving measure, Congress has required the Centers for Medicare and Medicaid Services (CMS) to establish a competitive bidding program. Under this program, Medicare recipients will be able to obtain DME – including supplies and repairs – only from those suppliers selected in CMS’s competitive bidding process.When CMS tried competitive bidding n 2008, there were serious problems – such as drastically reducing the number of places where people could obtain wheelchairs and other equipment, as well as supplies and repairs.
In response, Congress temporarily delayed competitive bidding. The new program is slated to begin in January 2011. We are actively working with CMS so that competitive bidding for power wheelchairs will have a smooth transition for people who need wheelchairs and other durable medical equipment.
- First Month Purchase Option. As a cost-saving tool, Congress is considering requiring people who use power wheelchairs to rent them for 13-months before Medicare will purchase the wheelchair.
This is a serious concern because when people have a permanent or long-term need for wheelchairs, purchasing – rather than renting – enables them to get the right wheelchair and seating for each individual. This helps avoid serious – and expensive – secondary conditions such as pressure sores that often require hospitalization.
We are advocating an exception from the rental period when a physician certifies that the person will need the wheelchair for longer than 13 months and an exemption altogether for certain classes of wheelchairs.
- 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 Medicare “in the home” rule often prevents people from obtaining the wheelchair they need to maintain independence and stay in their communities.
We support legislation (HR 3184) by Congressman Langevin (D-RI) that would fix the rule. The cost of the legislation is unknown. There is a concern that the increased costs could be substantial if 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.
Research
- Stem Cell Research. The National Institutes of Health has developed guidelines that impose strict ethical guidelines on embryonic stem cell research. See http://stemcells.nih.gov/policy/2009guidelines.htm. We provided comments to NIH in this process.
We support 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. The legislation would prevent future Presidents from unilaterally overturning President Obama’s Executive Order allowing federal funding for embryonic stem cell research without Congressional authorization.
- Christopher & Dana Reeve Paralysis Act. We are pleased to report that this act was included in S. 22, the Omnibus Public Land Management Act of 2009, passed Congress and was signed into law by President Obama. United Spinal’s CEO Paul Tobin attended the White House signing ceremony.
The act authorizes the Secretary of Health and Human Services to direct research on paralysis. It also authorizes up to $25 million per year through 2011. (Note: It is a victory to secure authorization, but we’re working towards Congress actually approving funding.)
Services and supports in the home & community — instead of an institution
- Community Living Assistance and Supports, CLASS Act
Lead by Senator Kennedy, the CLASS Act will create a national voluntary payroll deduction insurance plan for people with disabilities to pay for assistance with activities of daily living (e.g., dressing, toileting) and 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. Official projections are that, in the first ten years alone, the CLASS Act will bring almost $58 billion into the federal treasury and, in addition, save Medicaid $2.5 billion. The CLASS Act is included in major health reform proposals in the House and Senate.
- Community Choice Act
Currently people with disabilities on Medicaid are often forced to go into a nursing home or other long-term care facility to receive needed services.Senator Tom Harkin (D-IA) and Congressman Danny Davis (D-IL) are sponsoring the Community Choice Act (HR 1670/ S 683) to reverse this mandate and make home and community-based services the first choice for Medicaid recipients. These services include activities of daily living, financial management, and meal planning, shopping and preparation based on a functional needs assessment and plan.
We have actively advocated that the Community Choice Act be included in health reform, but its cost (officially estimated at $68 billion over 10 years) has been a deterrent. Currently we hope it will be included in health reform as a Medicaid State Option so states would have the choice to include the program in their Medicaid programs.
- 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 services in the home and community to eligible people. The bill builds on the state option created by the Medicare Modernization Act whereby states may choose to have home and community-based services as part of their state Medicaid plan rather than as a Medicaid waiver program.
Social Security – Reducing the Tragic Disability Determination Backlog
We have been successful in obtaining increased funding to enable the Social Security Administration to reduce 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 that Social Security has had a huge unexpected surge in both retirement and disability claims due to the economic crisis. Processing times for disability claims are growing at the initial levels and a surge in appeals is anticipated. The average waiting time for a decision at the hearing level is about 500 days. In some offices it is much longer. That’s in addition to at least 2-6 months for the initial processing. In this time, people’s lives fall apart, they go without medical care, and some applicants die while awaiting a decision.
Recent appropriations have finally allowed the agency to hire some new staff and just now reduce processing times slightly, rather than slow the growth of the disability determination backlog. We thank those of you who have urged your own Senators and Congressman/woman to support this funding. Special thanks are due to Congressman David Obey (D-WI) and Senator Tom Harkin (D-IA).
We continue to be active on additional Social Security issues including privacy and other concerns about the application and appeals processes. We have had a leadership role – including being invited to testify before Congress in both 2008 and 2009.
