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/.

Share Your Video for World CP Day!

“What do you want the world to know about CP?”

In honor of World CP Day 2017, UCP wants you to tell the world what you want to know about Cerebral Palsy (CP)! All you have to do is send us a short (less than a minute) video telling us what you’d like the world to know about CP and your video could be featured as part of video celebrating World CP Day on October 6th. 

 

For questions, and to submit your video, please email UCP National’s Marketing Specialist, Kaitlyn Meuser at kmeuser@ucp.org. 

United Cerebral Palsy Statement on Hurricane Harvey

We share the feelings of so many health and human service organizations across the U.S. who are watching the storm and recovery efforts underway in Southeast Texas.

We are thinking of all the families and communities who have been impacted by the storm. We know, from experience, that a storm of this magnitude can produce unimaginable destruction– and may compromise the safety of people living with disabilities.

United Cerebral Palsy affiliates in Oklahoma and Louisiana are actively engaged in the recovery efforts underway and may assist as called upon. We are also monitoring the storm and the possible impact it may have for our affiliates in Louisiana and other neighboring areas. UCP affiliates work diligently on disaster preparedness plans to ensure that the individuals and families in their care, across the U.S. and Canada, are always kept safe in any type of emergency and UCP National supports their efforts.

For information regarding the status of Harvey, please visit HHS’ Public Health Emergency website: https://www.phe.gov/emergency/events/harvey2017/Pages/default.aspx

Residents in the Houston area may also find resources at the Mayor’s Office for People with Disabilities: http://www.houstontx.gov/disabilities/

To ensure that you. your family and your loved ones are prepared in the event of a natural disaster, we recommend our blog post at My Life Without Limits: http://mylifewithoutlimits.org/disaster-preparedness-month-tips-and-tricks-to-help-you-live-a-life-without-limits/

FEMA‘s resources for people with disabilities, access, and functional needs: www.fema.gov/resources-people-disabilities-access-functional-needs

Additional preparedness tips and resources can be found on UCP’s website at: http://ucp.org/resources/health-and-wellness/safety/disaster-preparedness/

 

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.  

 

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.

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.

UCP National Names Armando A. Contreras As The Next President & CEO

Contacts: Diane Wilush
 Richard Forkosh



 
 UCP National Names Armando A. Contreras As The Next President & CEO (Washington, DC) – United Cerebral Palsy, Inc., (UCP) the leading national organization which advocates and promotes the inclusion and full citizenship of individuals living with cerebral palsy and other disabilities, announced today that its Board of Trustees has named Armando A. Contreras as President and CEO effective June 5, 2017. Contreras is currently the CEO of UCP of Central Arizona and will replace Richard Forkosh, who is currently serving as UCP Inc., Interim CEO.“We are delighted to have Armando join UCP as the new President and CEO,” said Diane Wilush, Chairman of UCP National’s Board of Trustees. “The selection process was rigorous, and Armando is the perfect choice; his leadership at UCP of Central Arizona and track record of organizational management, fiscal responsibility, and his mission driven focus will continue to build a strong future for UCP National. Most importantly, Armando is devoted to serving and empowering people with disabilities and he truly embodies everything our organization stands for.”

“It has been a privilege, honor and a true blessing to have served as the CEO of United Cerebral Palsy of Central Arizona for the past seven years,” said Armando Contreras. “I am abundantly grateful to have worked with purpose-driven, passionate staff that are committed to enhancing the lives of thousands of children, teens and adults by providing the resources necessary to build a life without limits! I would also like to express my sincere gratitude to Richard Forkosh for his executive leadership and exceptional integrity during his term as Interim CEO. I look forward to working closely with the UCP National Board, Affiliates and Staff to address the priorities at hand, set goals and build a pathway to sustainability.

As the CEO of United Cerebral Palsy of Central Arizona for the past seven years, Armando has increased net assets, built internal capacity, standardized business processes and enhanced the trust and communication in the organization. Contreras was instrumental in executing an agreement with Circle K, a major fundraiser collaborator of UCP’s for over 30 years, responsible for expanding therapy services for underserved children at the state of the art, UCP Downtown clinic, and diversified the organization’s grant and philanthropic base. Contreras has significantly increased UCP’s community awareness of the vital programs and services offered by UCP not only within the philanthropic circles, but also with public officials and key stakeholders in the disability community. Today, UCP of Central Arizona is one of the most highly respected agencies in Arizona serving children, teens and adults with various disabilities.

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About United Cerebral Palsy:

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 70 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit .

UCP Expresses Concerns About American Health Care Act of 2017

Last Thursday, Members of the House of Representatives passed, by a narrow margin, H.R. 1628 (the American Health Care Act of 2017, or AHCA for short). United Cerebral Palsy, along with our colleagues in Washington, expressed concerns about the bill in its current form (as well as previous proposals that were circulated).

 

We joined coalitions focused on the preservation of coverage for individuals with pre-existing conditions, coverage for rehabilitative and habilitative services, and protecting Medicaid. We also took part in advocacy efforts with the Consortium of Citizens with Disabilities, a coalition of 100 national disability organizations working together to advocate for national public policy that ensures the self-determination, independence, empowerment, integration, and inclusion of children and adults with disabilities in all aspects of society. In short, we are not alone in our concerns and we will continue to work together to fight this harmful bill.

We share the concerns many of you have voiced to us about the lack of review by the Congressional Budget Office of this latest bill, and the potentially devastating consequences the House bill as written could have on the 175,000 families served by UCP’s affiliate network (and really all individuals with disabilities who rely on Medicaid for health coverage and/or long-term services and supports).

We are hopeful that as the Senate deliberates, more information about the projected impact of the House bill will become known and that the Senate will not pass a bill that would bring harm to our community.

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/

Jeffrey Cooper, Recipient of the Kathy O. Maul Leadership Award at 2017 UCP Annual Meeting

Congratulations to Jeffrey Cooper, President, and CEO of UCP of Central Pennsylvania on being named the recipient of the Kathy O. Maul Leadership Award at the 2017 UCP Annual Meeting in Nashville, TN!

Thank you for all of your hard work, leadership, and dedication to individuals with disabilities!

Jeffrey Cooper, President, and CEO of UCP of Cental PA with Interim CEO of the UCP national office, Rick Forkosh.

Endrew F. v. Douglas County School District: Students With Disabilities and “Meaningful” Education

January 11, 2016 marked a momentous day for individuals with disabilities throughout the United States with the Supreme Court hearing arguments for Endrew v. Douglas County School District. The debate revolves around the interpretation of the 1982 Board of Education of the Hendrick Hudson Central School District v. Rowley case, relating to the Individuals with Disabilities Education Act of 1975 (IDEA).

A family in Colorado and their son Endrew argue that IDEA was intended to provide children with disabilities the access to a meaningful education which also allows for “significant educational progress.” The school district, however, interprets that IDEA has no set standard, and simply ensures that the child receives personalized education which is sufficient (i.e. “merely more than de minimus”). Endrew’s family is concerned that the Douglas County school district did not offer adequate resources for children with disabilities to achieve. After Endrew completed the fourth grade in the Douglas County School District accompanied by his Individualized Educational Plan (IEP), his parents disagreed with the proposed IEP for his fifth year and made the decision to put him in a private school. Endrew and his parents argued that he was not being sufficiently provided a Free and Appropriate Education (FAPE), as mandated by the IDEA, and were seeking reimbursement for the tuition of his private school.

Although Endrew and his family lost this case, over the course of administrative hearings and lower court cases, the family and the school district have been arguing over the measure of “some academic progress” and whether the district must meet a “merely more than de minimus” requirement. The federal government supports Endrew and his parents, drawing on Rowley which indicated that a FAPE must provide meaningful access to education which is much higher than “merely more than de minimus.”

Through the course of the Supreme Court’s oral arguments, Chief Justice John G. Roberts Jr. summarized that the main issue at hand is whether or not IDEA places emphasis on the word “some” or the word “benefit” in the phrase “some benefit”, each resulting in both contrasting and notable meanings that has manifested into the current argument: Providing some benefit would achieve the goals of the school district in distributing education that is merely better than nothing; whereas providing some benefit implies that the education be meaningful and allow for academic progress, which Endrew and his parents seek. Justice Elena Kagan also reminded the school district’s attorney of the precedents set in previous cases in which “some benefit” was repeatedly intended to have “some bite.”

The outcome of the Court’s decision will define the quality of education for students with disabilities for years to come. Those interested in following the case, can find a copy of the transcript from this week’s arguments here. United Cerebral Palsy, along with other organizations, has signed to an amicus brief which can be viewed here. We will continue to monitor this case, and will be interested to see how the Court decides.