State funding not proper source for research

The article appearing with this one encourages readers to support Senate File 111, which asks the Minnesota Legislature to annual fund spinal cord and traumatic brain injury research. We disagree.

We strongly support funding for spinal cord and traumatic brain injury research. That’s especially true considering that in 2013 the United States spent approximately $9 billion in supports for individuals with spinal cord injuries. The National Institute of Health spends $94 million on research and is one of the largest funders of these projects.

We simply do not believe the state should be funding research projects when the cost of care to Minnesota taxpayers will not be reduced until a cure is discovered. Those who have lived with spinal cord injury for many years know that this is a medical dilemma that has eluded researchers for many years. Despite all of this time we still know very little about nerve regeneration.

Minnesota has limited resources and many obligations. If funding is approved for this research, most likely it will come from programs needed by all people with disabilities (including those with spinal cord injuries) for care supports. If funding is appropriated at the state-level for spinal cord and traumatic brain injury research why not multiple sclerosis, developmental disability or mental illness or other disabilities’ research that are in equal need of cures?

The federal government funds medical research. Private entities, such as The Christopher and Dana Reeve Foundation, also have targeted research initiatives. Funding at the national level allows more extensive and ultimately more effective—studies than the limited amount of research that could be conducted at any state level. The federal government has an established infrastructure to oversee medical research projects. This type of infrastructure would have to be created at the state level, further diluting the funding available to conduct the actual research.

More importantly, people looking and waiting for an eventual cure are still in need of community-based services. Health insurance doesn’t pay for ongoing supports and long-term care insurance remains prohibitively expensive. Someone who already has a disability generally cannot purchase long-term care insurance at any price. Daily personal care assistance for someone with a spinal cord injury or other severe disability can easily cost more than $30,000 a year, so even middle income families can’t afford to pay out of their own pockets for long-term care supports.

Since the 1970’s Minnesota disability advocates have successfully advocated for home and community-based supports, along with appropriate reimbursement for providers, in order to promote higher quality care for individuals with disabilities. State-funded programs provide daily supports for people with disabilities and their families, and help prevent costly hospitalization and institutionalization. These programs help people with disabilities attain a good quality of life through inclusion, education and employment, so they can contribute to their families and communities.

Ongoing supports remain underfunded due to state budget limitations. Disability advocates work every year to make sure existing funding remains in place and that unmet needs are addressed. The Minnesota Consortium for Citizens with Disabilities has a long list of state policy priorities that readers can find on their website. As our community continues to advocate for vital services, some lawmakers have no desire to add any additional use of taxpayer dollars to support any type of health care. Including subsidies for research will only make it more difficult to maintain the programs we currently have for people with disabilities.

Let’s not pit one disability group against another at the capitol. Let’s not risk securing funding for limited research at the expense of cutting programs needed by a broad spectrum of Minnesotans with disabilities. Instead, let’s work together to advocate for enhanced funding at the state level for “care” and enhanced funding from federal and private funders for a “real cure.”

(Editors’ note: Bangsberg and Benjamin each have 40-plus year post-injury. They also have many years of advocacy experience for persons with spinal cord injuries.)

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