Mr. Speaker, I want to begin by thanking the gentleman from Florida (Mr. Deutch), my colleague, for yielding. It is an honor to join him this evening to discuss the cause and mission that is very close to my heart. As many of my colleagues…
Mr. Speaker, I want to begin by thanking the gentleman from Florida (Mr. Deutch), my colleague, for yielding. It is an honor to join him this evening to discuss the cause and mission that is very close to my heart.
As many of my colleagues know, I was injured back in 1980, as a young police cadet, when I was accidentally shot and paralyzed in the police locker room when a police officer's gun accidentally discharged. So, the cause of finding a cure and better treatments for spinal cord injuries and supporting family members as caregivers of people with spinal cord injuries has, again, been a passion of mine and mission for many years.
In late 2001, it was my privilege to join Christopher and Dana Reeve, two very dear friends of mine whom I got to know very well over the years, in announcing the creation of the Paralysis Resource Center, or the PRC, which was officially established in 2002 as part of the Christopher and Dana Reeve Foundation. These were two remarkable individuals, as I said, I got to know and who became friends of mine over the years.
I can remember back when Christopher Reeve was paralyzed in his horse riding accident and how, instead of being quiet and introverted and just dealing with his recovery, he made it his mission to call attention to the cause of spinal cord injuries and the need for further research to be done and support services to be provided. He was an amazing inspiration to me because he gave voice and was a face of spinal cord injuries and the work that needed to be done to find a cure.
Because of his work and that of the Christopher and Dana Reeve Foundation, we are getting closer and closer every day to finding a cure for spinal cord injuries; and we are getting closer and closer every day to providing support for better quality of life for people with disabilities and paralysis and further support for the families of those who care for people with disabilities, especially those with spinal cord injuries.
In 2009, I was so proud to support the enactment of the Christopher and Dana Reeve Paralysis Act, which formally authorized some of the programs that have led to the success of the PRC. This center has grown to include a network of information specialists, a number of veterans programs, a Peer and Family Support Program, a substantial Quality of Life Grants Program, and a neurorecovery rehabilitation network.
It really is an inclusive center. It conveys the message that people dealing with spinal cord injuries or nerve-related conditions are not alone, that there are people and organizations around them who care and are willing to give the advice and counsel support that they need. So whether you are living with paralysis or you are the caregiver of a loved one who is paralyzed, the PRC provides resources and information to help serve the specific needs of those affected by spinal cord injuries.
We know there are more than 43 million caregivers in the U.S. providing support to loved ones with chronic disabling conditions on a variety of disabilities, whether it is a sick child or a
sick parent or, in particular, those living with spinal cord injuries and paralysis.
Reports estimate that the annual economic value, if we had to put a price tag on this uncompensated care of family caregivers, to be somewhere approximately at the level of $470 billion annually--$470 billion annually, if we had to put a dollar figure on this uncompensated care. That is more than the total Medicaid spending was in 2013. That is when this study was done and those statistics were made public.
The benefits of family caregiving, of course, are plentiful and it is what families do for one another. If you have a sick child or a sick parent or a loved one, families so often step up to the plate and they provide that uncompensated care. Again, it is what families do. But, at the same time, it can also take an emotional, mental, and physical toll.
As a result, respite is the most frequently requested support service among family caregivers. Respite is that little bit of assistance where you have someone coming in to give the caregiver a break during the course of a week. Maybe it is an hour or two a day or a few hours during the course of a week that can make all the difference in allowing the caregiver themselves to go to the doctor or go do their grocery shopping, the things that are important to the rest of the family, or bringing a child to a baseball game or soccer practice; again, just those little everyday things that maybe we often take for granted that a family caregiver may not be able to do but for the fact that they have respite coming in. As a result, respite is, again, the most frequently requested support services among family caregivers.
Supported by the Christopher and Dana Reeve Foundation, the Lifespan Respite Care Program, which I helped to create back in 1996 with then- Congressman Mike Ferguson, a Republican from Pennsylvania, it was a bipartisan effort in creating this program, which operates now in 35 States and the District of Columbia, complements the PRC's efforts to help paralyzed individuals achieve a high quality of life by ensuring that caregivers who help them also receive relief and care, again, and support themselves.
Access to respite services has been shown to promote caregiver health and well-being, promote family stability, reduce the likelihood of abuse and neglect, and delay or even avoid the need for admission to costlier, long-term institutional settings, resulting in significant savings for the healthcare system and ultimately taxpayers, but ultimately helping the loved one who needs the care receive better care, because the loved one providing the care gets the support and the break that they need.
So beyond supporting access to respite for caregivers, we know the PRC's services and programs have touched the lives of people across the country, including those residing in the Ocean State, where I am from in Rhode Island.
For instance, Sarah Galli of Rhode Island spoke about her brother, Jeff, who was injured in 1998, and I would like to share her impactful words on the importance of the PRC now. She wrote:
``July 4, 1998, was the day that my family changed forever. My healthy, strong, athletic 17-year-old brother dove into the shallow end of a swimming pool and was rendered a high-level quadriplegic.
``Each Independence Day that followed has been a reminder of how quickly and irrevocably Jeff had his physical independence taken from him. It is also a reminder of how grateful I am for the support that has enveloped my family with care.
``I can't speak for my brother's experiences as a quad. That is his story to tell. But here is mine. In the years following his accident, I have counted on the Paralysis Resource Center and the Reeve Foundation for support. I have referred friends and strangers to them who require information and advocacy.
``And as a theater major in college, I started a student cabaret, Born for Broadway, that expanded an annual gala in the years since, raising awareness and funds for paralysis organizations, including Reeve. And I have also picked up the phone on several occasions to call the PRC and cry. Sometimes you just need to know that you are not alone.
``A friend of mine, Reeve supporter Jeff Ruben, wrote a song about a pal who lives with paralysis, using the lyrics, `I believe in miracles.'
``I don't believe in miracles, but I do believe in Jeff. And I believe in Reeve. Do you?''
Mr. Speaker, we know the PRC's network of support remains strong to this day. When another Rhode Islander, 21-year-old Jack Calbi, was injured in a mountain bike accident this past April and left paralyzed from the chest down, the PRC immediately reached out to Jack's family to discuss the array of resources available.
Nearly 6 million Americans live with paralysis, depend on robust services and supports, respite for caregivers that love them, and a continued investment in the science and innovation that will lead to the treatments and cures of tomorrow.
The PRC has become a beacon of hope for so many. And as my dear friend Christopher Reeve said, ``Once you choose hope, anything is possible.''
Christopher and Dana Reeve were friends of mine. I miss them dearly. They truly did provide hope to me and millions of others, whether affected by paralysis or some other nerve disorder or disabilities in general, or the families that are affected by this condition as well. They made a difference, as has the PRC. I am grateful for their work and I am grateful for all the efforts to keep the PRC going strong so that they can continue to help those living with paralysis, their families, and for those who may be affected in the future.
And together I know that one day, because of all the efforts that are going on through amazing research right now, as we get closer step by step every day to finding a cure for spinal cord injuries, that families will know that they are not alone, that we are in this together, and that PRC and the Christopher and Dana Reeve Foundation are helping us to one day get one step closer to finding the cures and those treatments that we so desperately look for.
Mr. Speaker, I thank my colleague from Florida for raising attention to this issue and for yielding to me.