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Issues Close to Home: SCIRP, Health Benefits, Medicare 


New York Spinal Cord Injury Research Program
The New York Spinal Cord Injury Research Program (SCIRP), established in 1998, has raised over $70 million for spinal cord research. The program funds research through a surcharge on speeding tickets: if you speed in New York, a surcharge goes into a trust fund for spinal cord research. As moving violations account for many spinal cord injuries, this funding mechanism is appropriate and vital. This trust fund has helped establish New York as a leader in neuroscience research that has led to advances in robotics, electrical stimulation, drugs to prevent damage and promote repair and much more.

Despite these successes, in 2010 the funds raised through SCIRP were used for other purposes, namely to balance the state's budget and pay its bills. The end result was a loss of support for initiatives such as cutting-edge therapies for New Yorkers with spinal cord injuries, funding for research, new inventions and technologies that would have served as treatments for spinal cord injuries and the training of new SCI physicians and researchers.

The disability community lobbied New York Governor Andrew Cuomo to make the right decision and use the SCIRP funds for their original purpose. Advocates appealed to the governor by claiming the state's misuse of funds violated the spirit of the SCIRP law, and implored him to ensure that SCIRP continued to receive the $8.5 million per year it was due to continue funding critical spinal cord injury research. Unfortunately, the Governor did not include funding for SCIRP in his 2014 budget.

However, that did not cause the Foundation and the paralysis community to stop fighting for this program. Working with others in the paralysis community, we sent out alerts made phone calls and, in the end, the New York State Assembly and Senate included $2 million in the NY State budget for the NYS Spinal Cord Injury program.

This was a great success – and was only possible because advocates from across the country reached out and were heard. Thank you for your work on this – and we will continue to keep you updated as we learn of new developments.

Essential Health Benefits Rule: Habilitative and Rehabilitative Benefits
Under the new health care law, most health insurance plans will be required to cover at least the following essential health benefits (EHB): ambulatory patient services, emergency services, hospitalization, maternity and newborn care, mental health and substance use disorder services (including behavioral health treatment), prescription drugs, rehabilitative and habilitative services and devices, laboratory services, preventive and wellness services and chronic disease management, and pediatric services including oral and vision care. Coverage of habilitative and rehabilitative services is particularly significant for the disability community, but it remains to be seen how states will move forward in assuring those benefits are covered.

On February 20, 2013, the department of Health and Human Services (HHS) released a final rule that outlines health insurance standards related to the coverage of essential health benefits. The rule provides significant flexibility to states to shape how EHB are defined. Despite releasing a final rule, there is no language defining habilitative services. This means states will be left with significant flexibility to determine habilitative coverage, possibly at the expense of the disability community.

As states continue to define their essential health benefits, the Reeve Foundation will continue to work with HHS and with partners in the disability community to ensure that the unique health care needs of people living with spinal cord injury and paralysis are taken into account. We will update you as we find ways and places for you to speak out to ensure the benefits you need are included.

Medicare Settlement Update
Over the past few months, we've been updating you on the court case regarding the Medicare "improvement standard." This standard resulted in Medicare coverage being denied to thousands of beneficiaries on the grounds that their conditions were chronic and not improving. A settlement agreement was reached in November to do away with the improvement standard, and on January 24, the settlement was officially approved by a federal District Court during a fairness hearing. This is great news for the disability community, as thousands of people living with spinal cord injury and paralysis will now be able to obtain Medicare coverage for therapy and care services even if they are unable to show that those services are leading to improved health conditions.

What happens next is that the Centers for Medicare & Medicaid Services (CMS) will have to revise its Medicare Benefit Policy Manual to reflect the changes that stem from the court's decision. Coverage will now be available for skilled maintenance services in home health, nursing homes and outpatient settings, regardless of whether or not a beneficiary's condition will improve. This is especially significant for those with spinal cord injuries, as many in the disability community depend on Medicare coverage for in-home services such as nursing care and physical therapy. Coverage of skilled services begins now, even though CMS is in the process of revising its policy manual. CMS will also be responsible for conducting a national education campaign to make sure that Medicare providers no longer provide coverage based on the improvement standard.

Elimination of the improvement standard will have an extraordinary impact on the disability community, providing significant financial relief and necessary services that patients might not otherwise receive. Services needed most by those living with spinal cord injuries and paralysis will now be easier to access, and families will have fewer worries about the costs of those services.

However, despite this triumph, the path forward is not set in stone. The settlement does not mean that problems with the improvement standard are solved. Medicare is a big program, and it will take time for CMS to change the payment guidelines and educate providers on the new Medicare coverage rules. Other issues, such as denying services to beneficiaries upfront, also need to be worked out. As far as the impact of the settlement on private insurance, coverage may continue to be denied to those who do not receive Medicare benefits. We will continue to monitor the impact of the Jimmo v. Sebelius ruling on the private insurance market.

Jimmo v. Sebelius is certainly a success for the disability community. However, we need to keep an eye on the impact of the settlement as things move forward. We will be watching for the implications of the case as CMS develops and implements rules pertaining to coverage, and will keep you updated on how those rules impact you.

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Continue Christopher Reeve's LegacyPhoto by Timothy Greenfield-Sanders