UCP National Talks Assistive Tech with Provail

This post was written by UCP Summer 2017 Programs and Development Intern, James O’Connor

 

“We try to ask ourselves: what would make this person’s life better, faster, easier?”

This is what motivates Brenda Chappell, Director of Clinical Services at Provail, a UCP affiliate located in Seattle, Washington. Brenda recently spoke to us about Provail’s assistive technology programs.

[Image Description: A white woman with short brown hair wearing a green sweater and a black scarf holds a smartphone to a book while reading in what appears to be a children’s classroom. She is looking off to the side.] Photo: Lawrence Roffee

 

Assistive technology is an umbrella term that covers equipment, software, system, or any item that is used by people to find and or maintain a job and/or meet daily living tasks. Technology can be big, like an automated lift for van or bath, or small, like a Velcro-attached grip for a fork or a pen. It can be new-age interactive voice activated software for speech therapy or a wheelchair component. It can be high-tech–a computer screen operated by eye movement or low-tech, like a specially-designed door handle for people with muscle strength or dexterity problems.

Assistive technology can often be complex and very user-specific, and this is where Provail’s team comes in. At their AT (assistive technology) clinic, they take a holistic approach to finding the best technology for each person.

Brenda and her colleagues’ AT  programs bring professionals from Provail into schools and homes to recommend AT, and teach users, parents, teachers, therapists, and caregivers the best ways to put a person’s AT to best use. Provail works with kids as young as 4 years old, as well as adult clients, and individuals all the way through the lifespan.

Brenda notes that students with earlier access to AT have overwhelmingly better outcomes in both learning and lifestyle. She makes it clear that enabling mobility and communication at an early age are core to the program at Provail. “Before this unique program, we would see adults coming into the clinic with no AT and no mobility. Now, parents doing a 10-week program with us are finding successes that they never knew were possible.”

On top of helping people find and use the best possible AT for their needs, Provail also helps connect users with typical and alternative funding sources, making the stressful process of financing AT easier for many of their clients.

As assistive technology becomes more complex, more varied, and more common, it is important to put people first and keep in mind Brenda’s important question: what would make this person’s life better, faster, easier?

Check out your local affiliate to find out more about what type of AT services may be available, including the Bellows fund!

Reflecting on the ADA with UCP Staff and Interns

Coauthored by Sara Shemali and James O’Connor

Two women pose for a photo in front of the Capitol Building. One of the women is using an electric wheelchair.

“When I was 15 or 16 years old my best friend, my sister and I decided to go out for ice cream. We went to a new shop in the town nearby. Even though it was a new building, it was an old style ice cream shop that had been built to invoke that aesthetic; and, there was no ramp in the front of the store– only steps. The only ramp was in the back, leading up to the emergency exit. The employees told us they weren’t allowed to let us in through the back door. We were shocked but, after arguing and getting nowhere, we went someplace else. When we got home, I was still pretty upset. When my mom asked what happened, we told her the story. And she explained to me that what I had experienced was discrimination and illegal under the ADA. I think that was the first time I really understood what the ADA meant for me as a person with a disability.“

 

This is what our supervisor, Karin Hitselberger, said when asked about her most memorable experience of the ADA as a child. We spoke to her and Kaitlyn Meuser, the Marketing Specialist here at United Cerebral Palsy’s National Office, right before today’s 27th anniversary of the Americans with Disabilities Act (ADA) because we wanted to gain insight into the many ways that the ADA has shaped the experiences of individuals with disabilities in America.

 

As Program and Development interns for UCP’s National Office, James and I started our summer with a lot to learn about the history of the disability rights movement. We both carried what turned out to be fairly common misconceptions about the ADA, and we asked Karin and Kaitlyn, who both happen to have cerebral palsy, about some of those most common misconceptions.

 

For me, learning more about the ADA throughout my internship, I realized just how comprehensive of a piece of legislation the ADA is. Whereas some may know it only as the law that regulates curb cuts and ramps, or just an anti-discrimination law, in reality it serves both of those purposes in addition to many more. Karin continued by highlighting just how multifaceted the ADA is. She pointed out the misconception and tendency to discuss the ADA in only one of its many capacities, without appreciating the diverse avenues in which it helps individuals with disabilities.

 

Karin also discussed the pivotal role that individuals with disabilities played in crafting the ADA. While the role of passionate allies cannot be overlooked, the engagement of individuals who encounter the barriers that the ADA addresses daily was crucial to passing the ADA law that we know today.

 

As a person without a disability, I had experienced the ADA in action even before I became an intern at UCP, although I had always witnessed it as an outside observer. One vivid memory I will always remember is a neighbor of mine, with cerebral palsy, whose mother had to advocate for him to be involved in gym class, and given the reasonable accommodations he needed to participate. Gym class was a privilege I had always taken for granted, but he had to fight to be afforded the opportunity I had. Interning at UCP has allowed me to step out of my bystander role and become more informed and involved on issues related to disability. Instances of discrimination in schools, hiring, and the workplace still occur today, but one point both Karin and Kaitlyn brought up was that because of the passage of the ADA, such discrimination is illegal (such as refusal to provide reasonable accommodations), and action can be taken to stop these practices. The ADA sets a baseline: a clear standard for inclusion, which is not only vital in itself but also opens the door to continue the conversation about disability and the next steps towards truly equal opportunity for individuals with disabilities.

 

My fellow intern James shares his perspective below:

 

When I started my summer here at UCP National, I was at least aware of the existence of the ADA, but was not even close to understanding its importance. As I have gotten to know more people who have been personally impacted by this legislation, and learned more about the history of the disability rights movement, I’ve come to understand how transformative the ADA has been to the disability community. It has enabled so many people to work, travel, and access the world around them.

 

My experience at UCP has allowed me to connect the curb-cuts and accessible elevators, that I see everyday, to the freedom and rights of the friends I have made here. I’ve had the pleasure of traveling to and from various events with Karin, who uses a wheelchair, and have had to rethink so much that I previously took for granted. I now find myself constantly looking for ramps and elevators, and generally reevaluating the accessibility of my surroundings. It really has fundamentally changed the way that I see the world, and I feel that I am beginning to understand how important the ADA is as a result.

 

Although the ADA is a much-needed starting point for legislation regarding disability, Karin and Kaitlyn agree there is more work that needs to be done to remove substantial barriers that individuals with disabilities still face. Getting into buildings is a right that needs to be afforded to individuals with disabilities, but access to the building itself is not the end of accessibility. Karin points out that physically having the ability to get into a movie theatre isn’t enough if a wheelchair user wouldn’t have anywhere to sit, or if there are no closed captions for someone who is Deaf. Cultural inclusion and universal design for individuals with disabilities are both still a work in progress.

 

While there is work remaining to continue to advance the rights of people with disabilities, it is of paramount importance to reflect on how much closer the ADA has brought us towards the ideals of equality and civil rights for all people.

ADA Education and Reform Act

The Americans with Disabilities Act (ADA), a historic piece of civil rights legislation for  individuals with disabilities, was passed 27 years ago this week. Since that time, individuals with disabilities have been able to seek enforcement of the law to ensure that they have access to public spaces.

 

The ADA helps to curb the discrimination faced by people with disabilities but Congress is currently considering the ADA Education and Reform Act, a bill that would change the ADA: granting more leniency to businesses, and prolonging the process of remedying ADA failures by these businesses. The bill is controversial and many advocates for people with disabilities are speaking up against it.

 

Supporters of the bill seek to remedy the issue of “drive by” lawsuits, a term used to describe when a person goes to a business for the singular purpose of filing a lawsuit under the ADA. These lawsuits are seen by many as solely efforts of financial gain at the expense of businesses, instead of efforts to resolve legitimate barriers to access for individuals with disabilities. While the existence of such lawsuits is problematic, there is no consensus on the best way to address this issue.

 

The bill would allow business owners a “pause in litigation,” giving them 60 days to acknowledge their violation of the ADA, and then another 120 days to make “substantial progress” towards remedying the issue. The bill, currently being considered in the house, has 14 co-sponsors from both sides of the aisle. Although not an issue that is divisive along party lines, the bill does not draw universal support because of its civil rights and practical implications.

 

While the supporters of the bill seek to protect businesses, its opponents strive to protect the civil rights of individuals with disabilities. The ADA has been recognized as a crucial step towards inclusion and civil rights for individuals with disabilities, and its importance for individuals with disabilities cannot be overstated. It would be reasonable to assume that individuals with disabilities would support legislation which strengthened the ADA—the very legislation that guarantees them civil rights. Yet, individuals in the disability community and their advocates are opposed to the poorly-named ADA Education and Reform Act.

 

As a reminder, the ADA does not require the payment of monetary damages to individuals with disabilities when a violation occurs. Rather, it is a handful of states that have laws which allow monetary damages, which is how “drive by” lawsuits became profitable for plaintiffs in those states.

 

This proposed law would amend the ADA by requiring an individual with a disability to submit a special notice to the business. The individual would have to consult a legal adviser to craft the notice, and include the specific sections of the ADA that are being violated. Thus, the burden rests on the individual with the disability, once they are denied access to a public accommodation, to have extensive knowledge of the ADA and to seek legal counsel to provide this special notice to the business.

 

Once the notice has been provided to a business, the business has nearly six months to make any progress regarding the violation, even when the issue would not take much time or money to fix. This is the case with ADA concerns, because the ADA already contains provisions which protect businesses, only requiring that changes be made when they are readily achievable and can be done “without much difficulty or expense.” Even then, there exist extensive resources for business owners to make these changes, including a Department of Justice ADA hotline and website, and ten federally funded ADA centers which provide resources and training in every state.

 

The Consortium for Citizens with Disabilities (of which UCP is a member) opposes the bill: 

“We know of no other law that outlaws discrimination but permits entities to discriminate with impunity until victims experience that discrimination and educate the entities perpetrating it about their obligations not to discriminate. Such a regime is absurd, and would make people with disabilities second-class citizens.”

 

In short, this bill is an inefficient means to address the issue of “drive by” lawsuits, and creates substantial barriers to the enforcement of the civil rights of the world’s largest minority group, individuals with disabilities.  

 

#KnowMedicaid

 

As Google search results indicate, many more Americans have grown concerned about losing their (or a family member’s) Medicaid benefit. We at UCP are receiving an increasing number of inquiries about Medicaid and the services and supports it provides for many individuals with disabilities and their families.

 

Even without a pending health care bill in Congress, it can be overwhelming to navigate the process of accessing the funding and benefits necessary to receive the support needed so you or your loved one can live a life without limits. While there is no one way to simplify the process, there are ways to make it a bit easier. The tips and tricks below will help you in your conversations with Medicaid and other agencies.

 

When you’re done checking out our tips, you will also find a PDF guide with the contact information for Medicaid (and related agencies in all 50 states) at the bottom of this post.

 

Keep Records of All Conversations, and Be Sure to Seek Clarification When Necessary:

 

Whenever calling your state or any other entity) regarding services and supports, be sure to keep notes about your conversation including: who you speak with , what department they are in, what department they refer you to, and any other pertinent details.

 

This is really important in the case that there is any confusion or conflicting information during the process , because you will be able to provide past information about what you were told and when.

 

It is also a great idea to ask the person you are speaking to to follow up with an email, if possible; that way you are able to see their summary of the conversation, and open up a dialogue that may help in the future should there be any misunderstandings.

 

Remember That State and Federal Agencies Are Not Identical:

 

When working with Medicaid, or any other government program or agency, it is important to be aware of the difference between the agency in your state, and the federal agencies in Washington, DC.

 

While agencies can be connected, the state agency handles state programs and issues and the federal agency counterpart handles national ones. When getting information about services and supports, it is vital to differentiate between what is available and provided by your state, and what might also be available on the national level.

 

This is also key because these differences affect how programs are funded, and may alter the process required to become eligible. Sometimes programs may be jointly run on the state and national level, but it is still important to be aware of when you’re talking to, or about, your individual state versus when you’re looking at things on a national level.

 

Not All States Run Programs the Same Way, (or a Call Agencies by the Same Name):

 

Another reason it is important to be aware of the difference between state and federal programming is because the way programs, such as Medicaid, are administered can vary significantly from state to state.

 

Therefore, be sure to investigate how things are run in your specific state, and not go off of the experiences of an individual who may live someplace else. A program that is provided through the Department of Health and Human Services in one state may be provided through the Department of Welfare in another.

 

Before getting discouraged and thinking something doesn’t exist, always remember to try a different name or department, because you never know what it might fall under in your state.

 

Always Ask for Other Options:

 

Just because one program, grant, or service is not an option for you, doesn’t mean there isn’t something out there that can help with your situation. Even if you find out that the program you are looking into will not work (or be available) based on for your situation,, be sure to ask the person you’re speaking with if they know of any other programs that may be able to help.

 

When considering your options, it is also important to remember that different programs have different eligibility requirements. So, be sure to provide as much information as possible to determine if you are eligible for a specific program.

 

Obtaining services through Medicaid (or other agencies) is rarely a simple process, but we hope that these tips– as well as our guide of various state offices involved in the administration of services and supports for individuals with disabilities– will make your journey a bit easier.
Do you have any other tips or tricks you would like to add to the list? Let us know on Facebook or Twitter using the hashtag #KnowMedicaid. To learn more about Medicaid in your state, check out our resource guide.

Navigating The Scholarship Landscape

 

A Signpost With Blank Signs Pointing in Many Directions

A Signpost With Blank Signs Pointing in Many Directions

As we have mentioned before, the transition from high-school to college comes with challenges for everyone. Oftentimes, one of the biggest challenges when starting college is figuring out how you are going to is pay for it!

 

With college costs skyrocketing in recent years, scholarships are becoming more and more important for college applicants. According to the National Center for Education Statistics, in 2012 the average student at a 4-year institution received $9,740 in scholarship and grant money. This is a quick guide to help students with disabilities navigate the often complex world of scholarships.

 

Finding A Scholarship

 

It’s important to understand the three biggest categories of scholarships: Merit-Based, Need-Based, and what I will call “other.”

 

Merit-Based scholarships award students based on academic, artistic, athletic, and really every imaginable type of achievement.

 

Need-Based scholarships attempt to identify individuals, through the FAFSA form, who need help paying for college. These scholarships are often provided by the college itself, or through the government.

 

The third category, what I referred to as “other,” contains scholarships that you could win for essentially every imaginable reason. Many of these scholarships are essentially an essay contest. There are scholarships for women, people of color, people with disabilities, people who play the drumset, and yes, even people who are really into daydreaming about the zombie apocalypse.

 

There are literally millions of scholarships out there, and a seemingly equally high number of services on the web dedicated to helping you find the right ones for your situation. Luckily for you, I spent some time sorting through those services. I narrowed them down to the three listed below.

 

Here is a list of three free, reputable scholarship search engines:

  • https://www.petersons.com/
    • Peterson’s has over 5000 scholarship providers, 1.5 million scholarships, and $10 billion in scholarships on their site.
    • As well as a scholarship reference, Peterson’s has great resources for finding the ideal university, as well as standardized test prep.
    • Their site is relatively easy to navigate and allows users to search scholarships by keyword (disability, Cerebral Palsy, etc.).

  • https://www.collegeboard.org/
    • CollegeBoard, the same company that administers the Advancement Placement (AP) and SAT tests has $6 billion in scholarships on its website.
    • The real advantage to using this site is that it allows users of AP and SAT testing to use the same login and profile information that they entered for those programs to search for scholarships, as well as a host of other resources.

  • https://www.fastweb.com/
    • Fastweb, a subsidiary of Monster.com, also boasts around 1.5 million scholarships, with $3 billion in total scholarship funds on their site.
    • Fastweb requires users to create a profile in order to search for scholarships. The profile is free and takes 10-15 minutes.
    • Fastweb will tailor the scholarships that it shows users based on their profile, and will notify users of new scholarships that might interest them.
    • Fastweb also has free career advice, financial aid and college search resources.

There are many other sites that may work for you, but these are the three that I relied on when I was applying for college scholarships only a few years ago.

 

Before using these sites, it helped me to sit down and make a profile of myself. Starting with characteristics such as race, gender, disability status, etc. and, then, try to make a list of the things you were involved with in high school such as:  your academic interests, your hobbies, and your potential areas of study in college. Each and every one of these things can open the door to a potentially lucrative scholarship opportunity.

 

It is also important to keep a few things in mind as you begin your search for scholarships.

 

Look Locally

 

Don’t forget to look for scholarship opportunities in your local area. Ask your school counselor about local scholarships, and maybe even give your local area library a call. I learned about a few very important local scholarships through my library.

 

You should also find out which UCP Affiliate is closest to you by using your zip code in our affiliate finder. It is worth giving your local affiliate a call to see if they have any scholarship or  suggestions of other funding opportunities for students headed off to college.

 

Pay Special Attention to the School You Are Attending

 

If you know which school you will be attending, make sure to do everything you can to find out about all of your specific college’s  financial aid and scholarship opportunities. Many of the scholarships you apply to will be specific to that school, and can be found on their website or by contacting their financial aid office.

 

You may also want to contact the disability services offices at your prospective schools to see if there are any grants or scholarships available specifically for disabled students.

 

Keep Track of Deadlines and Eligibility

 

You will find that as you accumulate scholarship applications, you will accumulate even more deadlines. I recommend putting together a calendar that only has scholarship deadlines and keep it separate from your application deadlines.

 

Put the Work In

 

You will notice that there is a wild difference in the amounts of work required to apply to various scholarships. While it may be tempting to spend a lot of time applying to “no-essay” national scholarships with applications that don’t take much time, keep in mind that there are probably hundreds of thousands of other students doing the same thing. I’ve found that you will get out what you put into the scholarship process, so don’t ignore the scholarships that require an essay or two.

 

This is a good little resource for writing scholarship essays. It always helped me to try to envision who was going to be reading my essay, and why they were interested in me and what I had to say. Try to convince your friends, family, teachers, mentors and anyone who is willing to proofread your essays and provide suggestions. Don’t be shy!

 

Getting Started

 

Here are some trustworthy scholarships specifically for individuals with disabilities to get you started on your scholarship search:

Google Lime Scholarship Program

 

Microsoft DisAbility Scholarship

 

Newcombe Scholarship for Students with Disabilities

 

Ameriglide Achiever Scholarship

 

Joe Cleres Scholarships for Students with Disabilities

 

Foundation for Science and Disability

 

disABLEDperson Inc. National College Scholarship

 

NBCUniversal Tony Coelho Media Scholarship

 

It may also be worth checking out this financial aid resource for students with disabilities put out by George Washington University’s HEATH Resource Center. HEATH serves as a national online clearinghouse on postsecondary education for individuals with disabilities.  

 

In conclusion… applying to college is stressful for a plethora of reasons, but scholarships don’t have to be one of them!

National Disability Voter Registration Week

Compared to other highly-developed nations around the world, the United States has about 20%-30% fewer registered voters of citizens who are legally eligible to vote. This number might not seem like a lot. However, the importance of voting cannot be minimized, especially for people with disabilities. That is why next week, July 17th through the 21st, is National Disability Voter Registration Week.

Voting gives citizens a voice in their local, state, and federal-level politics. As a constituent, their voice can make a difference. The greater the turnout, the more truly representative our government becomes. This is because voting empowers citizens to communicate their opinions and have the opportunity to influence all levels of government.

While the 19th Amendment and the Voting Rights Act secured voting rights for many historically disadvantaged voters, the passage of the Americans with Disabilities Act (ADA) in 1990 established the requirement of polling centers to have features that make voting areas accessible for citizens with disabilities. More recently, the Help America Vote Act of 2002 (HAVA), includes a provision that aims to further ensure that polling places as well as the registration process are universally accessible, whether accessed online or in person. HAVA also ensures that balloting equipment is accessible to everyone, and directs election administrators to train those who work at the polls on how to adequately and efficiently assist voters.

But, why is voting so crucial? It gives citizens a chance to express how they feel about a variety of issues. Whether it is a social issue, or a matter concerning the economy, casting a vote communicates constituents’ priorities to their elected representatives. Accordingly, representatives vote on legislation that matters to their constituents. Essentially, a democracy does not exist without the vote of the people.

Most people believe that the presidential election is the most important election to vote in. Despite that, votes can greatly influence politics at a state and especially at a local level. State and local policy issues are also usually the ones that impact us the most as a community.

As important as it is to vote, one must register first. Registering is a process that is simple for many, but accessibility is still too often a barrier for people with disabilities. The week of July 17-21 is National Disability Voter Registration Week 2017. To learn more and to host a voter registration event, find more information here.

Summer Camp For All

Image Description: A group of campers of all abilities smiling and enjoying their time around the pool.

Image Description: A group of campers of all abilities smiling and enjoying their time around the pool.

We can all fondly remember our summer camp experiences, exploring the outdoors and making memories. Summer camp, a place of adventure, excitement, and growth, is on the agenda for many children with and without disabilities this summer, and there are a multitude of options when it comes to choosing the perfect camp for you or your child.

United Cerebral Palsy’s affiliates around the country offer many different summer camp experiences. United Cerebral Palsy of Mobile’s Camp Smile, one of a handful of camps open to campers regardless of the severity of their disability or their financial means, is a camp exclusively for individuals with disabilities and their siblings. Glenn Harger, President and CEO of United Cerebral Palsy of Mobile, notes that Camp Smile “adapts to a child’s needs, instead of asking children to adapt to the camp.” United Cerebral Palsy of Delaware similarly invites children with and without a variety of disabilities to their two stellar day camps, Camp Lenape and Camp Manito. These camps foster friendships and make it possible for siblings to attend the same camp as children with disabilities. The camps, founded on the idea that children with disabilities are kids first, seek to create an inclusive environment for all children.

Image Description: A camper swimming in the pool with the help of a flotation device and two counselors.

Image Description: A camper swimming in the pool with the help of a flotation device and two counselors.

Camps Smile, Lenape, and Manito, in addition to many others, offer accessible grounds, dietary adjustments, and a greater proportion of camp counselors to campers than traditional camps. For example, Camp Smile makes accessibility a priority with its wheelchair accessible pathways, air conditioned log cabins and multi-purpose buildings, as well as an accessible bath house, among other amenities. Many camps across the nation specialize in specific services for children with disabilities. Some camps offer on-site speech and occupational therapy, teach campers how to ride bikes, focus on art therapy, or specialize in helping children succeed academically. Camps Lenape and Manito offer accessible swimming, with in-pool ramps to accommodate campers of all abilities and plenty of volunteers to help.

Perhaps the most notable aspect of camps which focus on disability is the lasting impact they can have on campers. Glenn recalled a young girl, around the age of four, and the evidence of her growth: “She just never smiled. The counselors put her on a horse and she had the biggest grin on her face.” Research supports the notion that children can benefit significantly from summer camps. A 2010 study published in the American Journal of Play found that camps can have positive cognitive, social, and identity effects on campers by combining skill improvement with fun and social activities.

Bill McCool, the Executive Director of United Cerebral Palsy of Delaware, fondly remembers the story of one young camper who had behavioral challenges, but for whom camp had a meaningful impact. The camper returned to UCP of Delaware when he was an adult, completely changed and matured, and applied to be an employee at the camp to help other young children benefit from the summer camp that had changed his life. Moved by this experience, McCool explained: “It means an awful lot when you see your campers become adults and you see who they become, at least in part because of the camp. That’s true for kids with disabilities, children without, and our volunteers. And many of them want to come back here!”

It’s no surprise that campers and volunteers alike look forward to returning to summer camps. At Camp Smile, campers can participate in zip lining, a ropes course, horseback riding, archery, swimming, fishing, and many more fun activities. The camp’s mission? To empower children and adults with disabilities to lead a life without limits.

 

Wondering if there is a UCP camp near you? Below is a partial list of United Cerebral Palsy affiliates that offer camp experiences.

ADAPT Community Network (New York City)

Easter Seals UCP (North Carolina and Virginia)

Stepping Stones Ohio

UCP of Central California

UCP of Central Florida

UCP Central Minnesota

UCP of Delaware

UCP of Greater Hartford

UCP Heartland (Missouri)

UCP of Hudson County (New Jersey)

UCP Land of Lincoln (Illinois)

UCP of MetroBoston

UCP of Mobile

UCP of Sacramento and Northern California

UCP of San Luis Obispo

UCP of Stanislaus and Tuolumne Counties

UCP of Tampa Bay

UCP of the Golden Gate

UCP of the North Bay

UCP of West Alabama

UCP of West Central Wisconsin

 

This post was written by Sara Shemali, Summer 2017 Programs and Development Intern at UCP National.

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.