Part 1 of 2 I am aware that this article may stir up some controversy, but there are certain things that must be brought out of the hidden, dark places and into the light. It’s also an opportunity to educate everyone: able-bodied and disabled alike, to the double standards that exist in funding for the physically disabled.
There is a discrepancy in funding available for those who become physically disabled later in life and those who are born with a physical disability. I know that’s a rather pointed statement but let me prove it with some facts gleaned from extensive research. Note: all research was done online using the google chrome search engine.
The largest group of people who become disabled at some point in life are those diagnosed with Multiple Sclerosis (MS). There are approximately 400,000 people living with MS in the US. MS Foundations received $47.5B from the National Institute for Health (NIH) for research in 2023.
Eight states in the US have grants that can be applied for to assist in paying for physical and occupational therapies, medical equipment (canes, walkers, wheelchairs), and for home renovations to make things accessible for people with MS. Crowdfunding is also very successful for larger items like accessible vans, roll in showers or slide/step-in tubs, and accessible kitchens, and the cost of medications for MS is extreme.
The second largest group in this category are people who sustain spinal cord injuries (SCI) as a result of car accidents, sports accidents, boating accidents, and falls. As I write this there are 302,000 people living with a SCI in the US. SCI Foundations and Research received approximately $100M from the NIH for research alone in 2023.
Then there are funds available in the form of grants to assist people with SCI in paying for medical equipment (wheelchairs, walkers, sliding boards, saska poles) and for home modifications (ramping, wheelchair lifts or elevators, bathroom renovations for roll in showers, grab bars, modified kitchens, etc). Crowdfunding has also proved very successful in obtaining the funds necessary to provide therapy services, wheelchair vans, and other living expenses those with SCI face on a monthly basis. Some are able to obtain damages from lawsuits if their SCI was a result of someone else’s choices: drunk drivers, or drivers under the influence of narcotics are good examples.
Let’s contrast that information with the largest groups of people born with physical disabilities. People living with Cerebral Palsy (CP) top the list. Currently there are 764,000 children and adults living with CP in the US. CP Research foundations received approximately $30 million dollars from the NIH in 2023.
There are funds and grants available for children with CP for physical therapy, occupational therapy, wheelchairs, walkers, and other personal aids; wheelchair vans, and renovations to make homes more accessible in the US. These come from a variety of forms: foundations, telethons, and professional sports organizations. Once a teen turns 18, all of this is cut off. Adults with CP have to advocate for themselves and that is an uphill battle. In 2023, most primary care physicians still think of CP as a childhood disorder. Crowdfunding has not proven to be very successful either. There are no legal avenues for people with CP unless their injury was a result of malpractice and that is very difficult to prove and uphold in a court of law.
The second largest group are people who are born with Muscular Dystrophy (MD). Currently there are 250,000 people living with the various forms of MD in the US. Funding for Research comes from two sources: the NIH and Muscular Dystrophy Association (MDA) and the combined total is approximately $27M per year. It must be noted that MD in all of its forms shortens the life expectancy with the average lifespan being between 18–25 years of age. The oldest living person with MD is now 40 years old. The funding for medical and personal equipment, wheelchair vans, and house renovations is very similar to that of those with CP as the funding sources are similar: telethons, sports organizations, and the MDA as well. Unlike CP, that care extends throughout the lifespan of a person with MD.
Physical Disability acquired:
MS = $47.5B in research funding for 400,000 people in the US.
SCI = $100M in research funding for 302,000 people in the US.
Total: $47.6B for 702,000 Americans.
Physical Disability from birth:
CP = $30 million in research funding for 764,000 people in the US.
MD = $27 million in research funding for 250,000 people in the US.
Total: $57M for 1.14M Americans.
The funding gap between the two is appalling. There is more empathy from the able-bodied community for others who were able-bodied, but have a