Disability leaders, health care professionals, and community members gather at Hofstra University to discuss future health care initiatives.

On Wednesday, June 3rd, Hofstra University in Hempstead, NY and United Spinal Association presented the 2nd Annual Disability Leadership & Policy Summit: Health Issues and People with Disabilities, a gathering to promote an exchange of ideas between people with disabilities and public officials, disability rights advocates, educators, transportation providers, business leaders, and health and human service professionals. The event was hosted by United Spinal Association, Nassau County Office for the Physically Challenged, Hofstra University and the National Spinal Cord Injury Association, and sponsored by Acorda Therapeutics.

“I’d like to thank everyone involved for their participation and support in making today’s program interesting and insightful. I’m hoping this is the beginning of a very long tradition here on Long Island. I’d like to give a very heartfelt thank you to our sponsors as well as the organizations that have helped coordinate this summit. We were blessed to have wonderful speakers at today’s event that were able to lend their expertise and host a discussion that is worthy of a university as great as Hofstra,” said Paul J. Tobin, president and CEO of United Spinal Association.

History

James J. Weisman, General Counsel for United Spinal Association, kicked off the Summit with a brief history of the event, and its goal in initiating a productive discussion on ways to effectively influence disability health care reform.

“During last year’s Summit we covered disability rights issues, including transportation, housing, and unemployment. What we have decided to focus on this year is health care issues facing the disability community. People with disabilities have unique needs, they have continuing care needs, and they are living in the community among us and want to remain there. There are all kinds of health-related issues––especially as we discuss health care reform––that is unique to people with disabilities. These issues need the attention of the Administration and Congress so that a health care reform package can be created to address the needs of our population,” Weisman said.

Speaker Highlights

Featured speakers included Peter Thomas, Esq, co-chair of the Health Task Force of the Consortium for Citizens with Disabilities; Dr. Mary Curtis, deputy county executive of Health and Human Services; Dr. Adam B. Stein, MD, chairman, Department of Physical Medicine and Rehabilitation, The North Shore-Long Island Jewish Health System; and Jamie Mitus, PhD, program director and an assistant professor at Hofstra University in the Rehabilitation Counseling Program.

Thomas, a Long Island native and double-amputee, presented a detailed overview of the major disability policy issues and challenges facing the US, as well as future health care reform initiatives––adding his own perspective on living with a disability.

“I want to thank United Spinal Association for inviting me to this wonderful Summit at Hofstra University and I also want to acknowledge my parents who are in attendance. I grew up on Long Island and when I was injured in a car wreck in 1974 my parents provided unbelievable guidance and leadership to me throughout my entire life,” Thomas said. “If you haven’t been following what’s happening in Washington, we are about to embark on a 9-week intensive period of activity on health care reform that we have not seen since the 1993-1994 National Health Care Reform Debate. And so it’s a very critical time.

” Thomas went on to address key disability health care issues that need improvement. “We need to expand the coordinated system of coverage, strengthen Medicaid, and make sure people with disabilities have a variety of options in both the public and private sectors. This will prevent the situation where the private coverage, employer-based system covers the vast majority of relatively young and healthy people and the public programs––Medicare and Medicaid––cover all the people with disabilities and chronic illnesses. That would be a disaster. Ultimately, that’s kind of what we have now in large measure and it’s not serving this country well at all,” he said.

“The major problem for people with disabilities is that the current private health insurance functions on the principle of avoidance of risk…The bottom line is that the only way insurance companies and health plans can survive is to weed out the people who need health care the most, because those are the expensive folks…Ultimately, our national health care priorities are inverted. If you listen to Senator Daschle, former majority leader of the Senate, he wrote a book about health care where he compared it to a pyramid where specialized, high-tech care is at the top of the pyramid and the bottom of the pyramid is comprised of primary care. Most countries in the world spend from the bottom up…That tends to be the opposite in this country, where we tend to spend the most on specialty care and whatever is left is used for primary care…We blow every other country out of the water in terms of the amount of money that our country spends on health care. Yet, our quality outcomes are pretty deficient…So we’re spending a lot more but we’re not getting the kind of bang for the buck, if you will.”

Dr. Stein, a former director of the Spinal Cord Injury Unit at Mount Sinai, where he developed the department’s program for ventilator dependent individuals––the only such acute rehabilitation program in New York State––discussed the barriers that people with disabilities encounter in trying to receive excellent medical care. He said the Summit offered him an opportunity to become familiar with the types of issues impacting the local disability community.

“I think for me being here, since I’m relatively new to the area, it gave me a chance to interact with the Long Island disability community. In the past, I’ve certainly interacted with the community in a number of different ways. At Mt. Sinai, we had very mature outreach programs, and that was very helpful. Here, I need to build, and so any opportunity to interact with people with disabilities, policy makers, or people who provide the care on the Island, these are the people I have to get to know,” Stein said, adding, “A big part of why I took the position at North Shore-LIJ was because of the perception that medical resources for persons with spinal cord injuries were not well-represented in Nassau County. I hope that I could make a difference here on Long Island.”

Exhibitors

Among the exhibitors in attendance was Long Island ILC, Hofstra Students with Disabilities, Hope Fitness, Independence Care Systems (ICS), Stay Home Beds, and the Testaverde Fund for Spinal Cord Injuries––giving attendees an opportunity to learn more about innovative products and services available to individuals with disabilities and aging Americans.

First-time exhibitor Anthony Testaverde, president of the Long Island Spinal Cord Resource Center, a project of the Testaverde Fund for Spinal Cord Injury, Inc., was in attendance to support United Spinal Association’s initiatives to provide children and young adults with disabilities outlets to adaptive sports-related activities. He is also trying gaining support to get more accessible facilities built on Long Island. The goal of Testaverde’s organization is to help patients and their families cope through the hardships of living with spinal cord injuries.

“I created Testaverde Fund after my son Joe was spinal cord injured 9 years ago on 4th of July when he dove into a pool and broke his neck. Initially, there was no one to go to for support and we had no idea what to expect. It’s a scary thing when you or your loved one is injured and you have no where to turn for questions,” Testaverde said. “And there are a million questions, between catheterizing and medication to where to go for assistance. The patients go through phases where they don’t want to deal with the fact that they are injured and don’t want to deal with their disability…The first year most patients don’t want to consider themselves disabled, depending on the severity of their injury. After that, some actually give up on life and try to commit suicide. They are frustrated and the medications start getting them crazy, and a lot of individuals gradually get addicted. Our goal is to eventually get them out of their chairs mentally and show them they are just like everybody else.”

Through the strong support of his family and friends, Testaverde’s son now skydives, surfs, and also started the Wheels to Water Foundation (www.wheels2water.org) to get other kids with disabilities into adaptive surfing and scuba diving.

“In my son’s situation, he had to rethink his whole life using a wheelchair. He went on to get his high school diploma and now he is attending Stonybrook University and actually dorming there. He is also an advocate and speaks at local schools once a month to show children that people who use wheelchairs are no different than anyone else.

Reception

A reception at the Hofstra University Club followed the Summit, honoring several individuals and institutions for their efforts in improving the lives of people with disabilities, including Don Dreyer, director of the Nassau County Office for the Physically Challenged, who is retiring after 30 years of service to the disability community.

“One of the extraordinary joys and honors of working for Nassau County for as many years as I have is that I’ve gotten to know so many people and made such an array of friends from all walks of life. When I reflect on having got to know and work for four county executives I realize how lucky I am. I’ve learned many important things from each and every one. It has helped shape the fabric of my life,” Dreyer said, as he addressed a crowd of supporters and friends. “It will always be a great blessing in my life to know all the friends I’ve made along the way and people with disabilities that I have served. We have affected not thousands but millions of people not only in this area but around the country. I was just sharing a story with someone in this crowd, when I was a little boy and I was in the hospital one time and the plastic cast was not quite dry and I was still in a lot of pain, I remember looking out the window after my parents left. It was getting dark outside and I kind of realized there were all these cars outside of Nassau Hospital. The theater district was not too far away. There were people going to restaurants and doing whatever people do on an average day. I remember thinking to myself would I ever be able to be amongst those people? Will I ever be able to just experiences life? I remember thinking to myself if I ever could, I would never take anything for granted. I suppose that’s why I don’t take things for granted. You all mean an incredible amount to me as well as the disabled population both here in Nassau and throughout the country. I’ve put a lot of miles in this wheelchair and probably left tire track marks somewhere in DC. And that’s the meaning of all of this.”

Other award recipients included Acorda Therapeutics, for its extraordinary leadership and outstanding commitment to supporting causes that profoundly impact the lives of people with disabilities.; and Linda Milch, who received the Hofstra’s 2009 Frank Bowe Award for her dedication and commitment to advocacy for individuals with disabilities and their families.