UCP Interns Visit Capitol Hill

 

This post was co-written by UCP Programs and Development Interns James O’Connor and Rebecca Zewdie

 

During our time interning for UCP’s National office, we have had the opportunity to learn about a range of policies that affect the lives of people with disabilities everyday. On June 22nd, we were given the chance to attend our first policy briefings on Capitol Hill. It was really interesting to get a taste of how the issues we have been learning about get discussed by advocates and other stakeholders here in DC. The briefings we were able to attend focused on issues surrounding employment for individuals with disabilities and Assistive  Technology (AT).

 

Employment (Rebecca’s perspective)

 

The first session of the day was a policy briefing that happened to be focused on the elimination of Section 14(c) of the Fair Labor Standards Act. Hosted by Representative Gregg Harper (R-MS) in a small room in the Longworth House Office Building, I was shocked to see attendees of the event standing in the hallway because the room was so packed. That was my first glimpse at how important discussion of this particular issue  is to many people with disabilities, their families, and advocates.

 

Some of the speakers on the panel included those personally affected by Section 14(c), a longtime member of several Congressional committees, and a man who advocated to phase out 14(c) in the State of Maryland. It was an incredible experience to see what goes on behind the scenes of bills and how people work  together to advocate for policies they believe in. It was also important for me to see the significance of health care policy, and the ramifications it could potentially have on individuals.

 

Among the speakers at the briefing, there was one man who helped change this law in his home state. Ken Capone, a resident of Maryland, helped pass the Ken Capone Equal Employment Act (EEA). The EEA mandates that the State of Maryland must phase-out  the payment of sub-minimum wage to those with disabilities by the year 2020. His ability to advocate for, and eventually to make, a critical change at the state level was inspiring. His contribution in Maryland will now prevent any individual with a disability from receiving a wage that is below the State’s standard for people without disabilities.

 

His in-depth analysis further solidified my drive to advocate for causes that are important to me. As I aspire to be involved in the health field one day, the briefing further affirmed  my chosen  career path. Attending this briefing also made me see the need for more conversations surrounding employment opportunities for people with disabilities.

 

Assistive Technology  (James’s Experience on Capitol Hill)

 

For people with and without disabilities, technology is a part of everyday life. As I’ve seen from day one of my internship here at UCP, Assistive Technology (AT)  is an integral part of the lives of many individuals with disabilities. I have witnessed first-hand how important AT is to someone like my supervisor, Karin. AT — such as her speech recognition software–  plays an important, daily role in enabling her to do her job. Because of the work I have done researching and advocating for technology-related legislation, it was exciting to learn that Karin and I would both be attending a technology-focused luncheon hosted by the Consortium for Citizens with Disabilities (CCD).

 

The luncheon featured panelists speaking about AT and how it has helped them or their family members manage medication, go on vacation, exercise, access the web, communicate, and much more. I was particularly compelled by Jason Owen, who was in a car crash in 1990 that left him unable to communicate. With the help of AT, he has become an author, a motivational speaker, a self-help coach, and a mentor to people around the country. Listening to Jason, I realized that AT is not only a tool for survival; it can enable people to really excel.

 

After the panel, there was an assistive technology exposition with booths showcasing technology ranging from adapted Google Glasses to remote presence technology. I have seen how important something as simple as a motorized headrest can be, but to see some of the incredibly advanced technology available was breathtaking. Every technology at the expo was designed to make communication, travel, exercise, or work possible and practical for anyone and everyone.

 

As I learned more about AT, I came to realize that much of the technology I was admiring was funded by Medicaid for many of its users. I was disheartened to learn that the Senate’s healthcare bill could leave this technology out of reach for many of the Americans that need it. This fact, as well as everything I saw and learned at the luncheon, emphasized for me how important it is that I be an advocate and ally to those in the disability community through my work here at UCP.

The Disability Integration Act (DIA) of 2017

It has been nearly 20 years since the Supreme Court ruled that individuals with disabilities have the right to live in the community, but even today, not all people with disabilities in the United States are given that meaningful option.

A new bill, The Disability Integration Act (DIA) of 2017, was introduced by Senator Charles “Chuck” Schumer (D-NY) in the Health, Education, Labor, and Pensions Committee to combat this issue. This bill would ensure that states are providing long-term services and support (LTSS) to individuals with disabilities In community-based settings, such as the individual’s own home. It also further enforces the American with Disabilities Act’s (ADA) mandate on integration.

Alongside the ADA, court cases, such as Olmstead v. L.C. (1999), have set the precedent for this legislation. The Olmstead ruling states that under the ADA, if placement in a community-based setting is appropriate, and the individual would prefer to live there, the state must comply with their wishes and fulfill those accommodations as those are their civil rights. The Disability Integration Act would help to make certain that every state is securing these rights in a timely manner, and that states are upholding the many details of this ruling.

The Olmstead ruling clarifies that “institutionalization is unjustified when:”

Supporters of the DIA legislation seek to provide a life that is as independent as possible for those individuals who can “handle and benefit” from the choice of living in a community-based living situation. This would allow individuals with a disability to have access to their greater community and have the opportunity to participate in economic, social, and educational advancement. 

The most frequent options for living independently are based on benefits provided by Medicaid. The funds provided to individuals through Medicaid afford individuals the ability to pay for their community-based services, such as personal care assistants, without having to worry about how they are going to pay for housing, utilities, or other additional necessities.

The DIA bill would further reinforce the integration mandate under the ADA, by ensuring that every individual that qualifies for LTSS has a “federally protected right” to become integrated into an community, and would create an extensive “state planning requirement” that imposes objectives to help transition individuals out of institutions. Furthermore, there is a requirement for states to annually publish a public report about the number of individuals with disabilities who continue to be served in institutions versus in their communities, as well as the number of individuals who have made the transition.

 

To learn more about the Disability Integration Act and other public policy topics, and to get more involved, check out our public policy resources.

Family-Centered Programs at UCP of Tampa Bay

 

Inclusionary education, the practice of including children both with and without disabilities in school-related settings, is becoming increasingly common in early education programs across the country.

United Cerebral Palsy’s affiliate in Tampa Bay Florida, UCP of Tampa Bay, is way ahead of the curve. Opened in 1992, their inclusionary childhood development center began as an alternative to institutionalization that gave parents of children with special needs, as well as their siblings, a convenient, structured preschool program.

25 years later, the program has blossomed into a NAC accredited developmental preschool, with a five star quality designation from the Quality Counts for Kids Program, which serves over 150 children each year. In the words of Laura White, the Executive Director of UCP of Tampa Bay, “The value of this program lies in allowing children with special needs and their siblings alike to be in a classroom setting together that builds a sense of mutual understanding and inclusion that leads to better outcomes for everyone.” Laura sees the program as an early preparation for the mainstream school system and a powerful way for young siblings to interact with other siblings as well as other children with unique needs.

In addition to the preschool program, UCP of Tampa Bay offers an inclusionary after-school program in which school aged children with disabilities and their age-appropriate (up to 8 years old) siblings are bused from school to the program, making pick-ups far easier for working parents. The program incorporates educational and occupational, physical, and speech therapies for those with special needs until they reach the age of 21. The facility features a fully accessible playground, with a wheelchair accessible swing, and a specialty decking that makes falls safer and aids accessibility. Laura estimates that, over the years, these inclusionary programs have served over two thousand children and over a thousand families.

 

Two young children in Tampa Bay at a graduation ceremony.

Two young children in Tampa Bay at a graduation ceremony.

 

Special thanks to Laura White, Executive Director of UCP of Tampa Bay.

 

To find out more about UCP of Tampa Bay and their programs, please visit their website at www.ucptampa.org.