UCP Expresses Concerns About Graham-Cassidy Legislation



As Members of Congress continue to discuss ways to improve the healthcare system in bipartisan hearings, United Cerebral Palsy expresses concerns about the Graham-Cassidy legislation being considered by some Senate Republicans.


The health care needs of individuals living with cerebral palsy and people with other forms of disability are complex, intensive, and diverse. Providers in the UCP affiliate network bring substantial value to the health care system through their approaches to the care of individuals with disabilities, including by offering important services in partnership with state Medicaid programs. Their innovative service models and practices, research, and use of technology have significantly improved access, community integration, and long-term outcomes for 176,000 clients served nationwide.

Capping and reducing spending for Medicaid, a primary source of funding for disability health services, could compromise needed care such as habilitation and rehabilitation services and also affect the ability of individuals with disabilities to thrive in their communities, including through greater use of long-term services and supports (LTSS). More broadly, such action undermines the innovation in care delivery that ensures that we all live lives without limits. And, this does not sustain the vision that forged United Cerebral Palsy back in 1949 as an organization dedicated to finding better alternatives to institutionalization for children living with cerebral palsy.

In the days ahead, we will be sharing our concerns with Senate offices and hope you will join us in opposing this bill that would impede the ability of our affiliate network to care for people with disabilities. United Cerebral Palsy is a part of major national coalitions focused on the preservation of coverage for individuals with pre-existing conditions, continued coverage for rehabilitative and habilitative services, and protecting Medicaid. In short, we are not alone in our concerns and we will continue to work together to support the needs of individuals with disabilities and the providers who serve them.


Senators need to hear from constituents, and we hope you will tell your story. To learn more about UCP’s public policy work and to get involved, please visit http://ucp.org/what-we-do/public-policy/.

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.