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.  


Join with UCP and Help Save Our Services!


Join UCP and others in the disability community TODAY (April 21) to tell Members of Congress how important it is they take action on the Department of Labor iStock_000012685951XSmallOvertime Exemption Rule and protect providers and those who depend on their services. The rule is in the process of being finalized and we need Congress to ensure that funding and protections are in place that allow providers to continue to provide quality care so individuals with disabilities and their families can live independent lives.

Call your Member! 

Once you reach the office, ask for the front desk staff to transfer you to their colleague who handles labor or health care issues. Remember – Members of Congress need to hear stories from home to understand why they need to take action!

We have provided talking points to guide your call! 



Senate Passes National Family Caregiver Support Program

Earlier this week, the Senate passed the Older Americans Act (OAA). This bill contains the eligibility fix for the national family caregiver support program that will now include older relative caregivers (aged 55 and over) of their adult children with disabilities (aged 18-59).

The National Family Caregiver Support Program was the first federal program to recognize the needs of the nation’s family caregivers who provide the vast majority of long-term services and supports. This program not only funds respite, but individual counseling, support groups, and caregiver training for family caregivers, primarily for those who are caring for the aging population.iStock_000013039002Small

With the increasing number of Americans who are caregivers of their adult children with disabilities, we are thrilled to see this improvement in the program. There are over 800,000 caregivers of persons with intellectual and developmental disabilities (ID/DD) who are over the age of 60. This number is projected to grow substantially with the aging of the “baby boomer” generation. People with intellectual and developmental disabilities are also living longer due to medical advances. As parents of these individuals age, they will require more support to be able to continue providing care to their adult children and avoiding costly and unwanted institutional placement.

More than at any other time, when Medicaid, Medicare, and Social Security are being threatened, helping family caregivers to continue providing long-term services and supports is good public policy.

The National Family Caregiver Support Program and the Older Americans Act have been on our radar as they have direct impact for improving and securing a life with out limits for those living with disabilities and their families.

Call Your Member of Congress and tell them how thankful you are for the passage of the National Family Caregiver Support Program and the Older Americans Act!

To help guide your call, we have put together a list of talking points.



The Latest Legislative Update from UCP

As October comes to an end we wanted to provide you with a quick wrap up of what’s happened, what is on the horizon and why it matters for you.iStock_000012685951XSmall

Let’s recap where we are with funding for the federal government: Early in the month Congress was faced with an expiring budget and the threat of a government shutdown. In quick action they voted on and passed a Continuing Resolution (CR) – this extends the current budget through December. The CR really serves as a patch to provide Congress with a bit more time to put together and vote on a longer-term budget. Conversations are currently underway to have a budget on the table that may possibly even extend through November 2016. We are constantly watching the discussions to see how disability programs funded through National Institutes of Health, Administration for Community Living, and Centers for Disease Control and Prevention are shaping up. These are the programs that provide services and supports necessary to live independent, high quality lives and have the most impact on our UCP universe. On the horizon is the upcoming debate of reauthorizing the debt ceiling. During all of these important discussions, Speaker of the House John Boehner announced that he is resigning and the search for his replacement is currently ongoing. As Congress continues to work through these issues we will continue to monitor and keep you posted.

In addition to the federal funding issues, there have been a few policy developments we want to update you on:

Home Care Rule

First, the Supreme Court issued a statement that it would not revisit the Department of Labor’s rule focused on compensation and coverage of personal care assistants, referred to as the Home Care Rule.This new rule, set to go into effect by the end of the year, would extend minimum wage and overtime protections to home-care workers. The new rules do not apply to home-care workers who are hired directly by patients or their families, but only to those who are employed through businesses, including nonprofit organizations such as United Cerebral Palsy. At UCP, we want to ensure the best outcome for both the workers who provide in-home care as well as those who depend on receiving it. With the rule in place, our focus is now to work with others to ensure that Medicaid state agencies provide reimbursement rates that enable caregivers to continue to provide the quality critical support people with disabilities need to live independently. Read our latest update here.

As implementation of the rule moves forward, we will provide you with information and resources on how to ensure these services are covered.

Reimbursement for Complex Rehab Technologies

The process for which the Centers for Medicare and Medicaid (CMS) reimburses tools and technologies used by the disability community through a competitive bidding program and over the years, we have updated you on the potential harms that competitive bidding has when it comes to accessing wheelchairs and other equipment classified as complex rehabilitation technology. There are two pieces of legislation right now that are attempting to address this harms. First, is a larger piece of legislation called “The Ensuring Access to Complex Rehabilitation Technology Act” of 2015 that seeks to solve the long-standing reimbursement problem by creating a new benefit category for complex rehabilitation technology. We are working with others here in DC to support this legislation and determine the best path forward to insure that those that need and utilize these technologies can have access to them.

Another more pressing issue as it relates to reimbursement of wheelchairs is a recent decision made by CMS to limit payment for complex wheelchair accessories. This is concerning as accessories is being defined as all customizable and individually configured components that are integral to a functioning char. This new decision will go into effect January 2016.

In an effort to reverse this decision, Congressman Zeldin of New York has introduced legislation (H.R. 3229) which would prevent the proposed rates from going into effect.  We sent an alert asking for you to call your Member of Congress and tell them to support this legislation. View our alert here and Call your member!

We also want to hear from you about why complex rehabilitation technology is important to you –what the impact would be if these new rates went into effect and limited your ability to afford and access this equipment? Send us your story so we can share it with decision makers!  

Facing the Day with Dignity

Today is the 25th anniversary of the passage of the Americans with Disabilities Act (ADA). This landmark legislation guaranteed increased access for people with disabilities in almost every facet of community life. The doors to full participation, independent living, and economic self-sufficiency for persons with disabilities opened metaphorically and literally in many cases.

11JE04GDAs an organization which serves and supports people with a broad range of disabilities and their families, UCP is keenly aware of the profound difference this singular act made in the lives of so many people – whether they realize it or not.


At the 25 year mark, there now exists an entire generation of people with disabilities who have matured into adulthood under the legal protections of the ADA. They expect accessible entrances to public building, wheelchair ramps and curb cuts, closed-captioning and sign language interpreters, and accessible public transportation options. And, for 20-somethings without disabilities, these accommodations have become a part of their consciousness as well. Even if they don’t experience disability personally, many people benefit from the changes brought about by the ADA. Just think of the young mother with a stroller who no longer has to deal with high curbs at each crosswalk.



However, there are still physical and attitudinal challenges to overcome and advocates are still needed. Every year, investigations are open and lawsuits are filed over issues of ADA compliance. And, every year, government officials, disability experts, lawyers and judges debate the meaning and application of various provisions in the law. Are the drivers for companies like Uber and Lyft independent contractors, not necessarily bound by the ADA? Are service animals always allowed in public school classrooms no matter the circumstances? What, exactly, do the words “reasonable accommodations” mean?



Like any other law, we will continue to debate the details and try to adapt interpretation of the now decades-old language to a rapidly changing landscape. However, we think that the true accomplishment of the ADA will not ultimately be judged by changes to transportation, education, or access to a local public library. The real victory to be claimed by the disability advocates and allies who worked for the law is the opportunity it provides for people with disabilities to face each new day with dignity that comes with full equality.


Regardless of the tactics it employs, the law explicitly states that:


“Physical or mental disabilities in no way diminish a person’s right to fully participate in all aspects of society…


It makes the unequivocal statement that in the eyes of Congress, representatives of “We the People,” people with disabilities are people, first and foremost, as well as full citizens of the United States. It is a recognition that the aspects of our society which prevent a person with a disability from being fully able to participate need to be addressed and Congress intends to provide a “…national mandate for the elimination of discrimination against individuals with disabilities.” It is the law of the land and confirmation that people with disabilities should never again have to accept anything less than opportunities provided to their peers.

Congress Passes ABLE Act

Washington Wire

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The U.S. Senate passed the Achieving a Better Life Experience (ABLE) Act of 2014 by a vote of 76 to 16 late Tuesday evening, agreeing with the House of Representatives that the bill should become law. President Obama is expected to sign the bill soon.

The ABLE (Achieving a Better Life Experience) Act allows individuals with developmental disabilities and their families to save money tax free for their disability service needs, and allows these assets to be exclude for purposes of eligibility to receive needed government supports including Medicaid, Supplemental Security Income (SSI), and Social Security Disability Insurance (SSDI). ABLE addresses barriers to independent living because individuals’ access to certain essential government funded programs can be lost once they establish a minimal level of income and savings.

Beginning in 2015, children or adults who acquire a disability before age 26 will be able to annually save up to the amount of the IRS gift tax exclusion, currently $14,000, and up to $100,000 total while remaining eligible for public programs such as Medicaid and SSI.  The ABLE Act will allow for similar certain individuals with disabilities and their families to maintain savings accounts similar to 529 saving plans for education.

Once the President signs the ABLE Act, the federal government will issue guidance on exactly how to set up and fund ABLE savings plans.

Thank You to Our Champions in Congress!


UCP has long relied on several advocates in Congress to help us push for positive Federal policies for people with intellectual and developmental disabilities. Some of these champions – such as Senators Tom Harkin, Jay Rockefeller, and Carl Levin and Representatives Henry Waxman, George Miller, and John Dingell are retiring and passing the baton to the next generation of legislators. 

This video honors those retiring Members of Congress for their legislative successes on behalf of people disabilities and was jointly developed by six national organizations – The Arc, American Association on Intellectual and Developmental Disabilities, Association of University Centers on Disabilities, National Association of Councils on Developmental Disabilities, Self-Advocates Becoming Empowered, and United Cerebral Palsy. 

On behalf of UCP, we would like to say “thank you” to these champions and we look forward to working with other Senators and Representatives who would like to continue their work to improve the lives of people with disabilities and their families. 





Kaelan Richards: 202-973-7175,


Washington, DC (January 2, 2012) – United Cerebral Palsy (UCP) issued the following statement in response to the passage by Congress of legislation to avert the so-called ‘fiscal cliff’ of tax increases and spending cuts.

“We applaud Congress’s action to prevent harmful tax increases and cuts to vital services and supports for millions of Americans. The deal passed by Congress protects Social Security benefits and Medicaid— but most importantly, the individuals and their families who depend on these safety net programs, and particularly those living with disabilities.

“However, we are very disappointed that the CLASS Act, which offered a framework for funding long-term services and supports, was repealed in the ‘fiscal cliff’ legislation. We are hopeful that the replacement Commission that was created in its place will be successful in helping our country to address these critical issues.

“United Cerebral Palsy urges Congress and President Obama to continue to work together to ensure that the programs and services that help so many Americans with disabilities and their families are protected in our ongoing budget debates.”

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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 100 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



Office of Compliance highlights inaccessibility of Capitol buildings 

Washington, DC (October 19, 2012) – United Cerebral Palsy (UCP) released the following statement today in response to the Office of Compliance’s Biennial Report on the 111th Congress, “Americans with Disabilities Act Inspections Relating to Public Services and Accommodations.”

The report, which is required by the Congressional Accountability Act and Americans with Disabilities Act (ADA), examined the accessibility of the House Office Buildings, as well as bathrooms throughout the Capitol complex. The findings show that while progress has been made in making the buildings more accessible, there are still significant problems:

·      93% of curb ramps on the sidewalks are not in compliance with ADA Accessibility Standards.

·      54% of the total exterior pathway barriers are a safety risk for people with disabilities.

·      None of the bathrooms inspected met ADA standards.

“For the 57 million Americans living with disabilities today, this is more than just a report— this is stark reminder that 22 years after the passage of the ADA, the fight for basic civil rights is not over. All Americans should have the ability to access their representatives and attend and testify at hearings, but it is clear that this is not the case. We urge Congress to act immediately to correct the safety issues, and work to ensure that all of the problems are fixed,” said Stephen Bennett, former President & CEO of UCP. “The findings in this report are very disappointing, and show how much progress is still needed to ensure that all Americans have the same rights and opportunities.”

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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 100 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



Washington, DC (October 15, 2012) – United Cerebral Palsy (UCP) has elected four new members of its national Board of Trustees, and has elected four leaders to serve as officers of the Board.

The Board of Trustees plays a critical role at UCP, helping to guide the organization and its efforts to educate, advocate and provide support to people with disabilities across the country. With 18 members, including four officers, the Board is a diverse and active group that works together to move UCP forward toward its goal of creating a life without limits for people living with disabilities.

Selection of Officers

Edward G. “Woody” Connette, an attorney in Charlotte, North Carolina, will lead the organization’s Board of Trustees as its new Chair, replacing outgoing Chair Bruce Merlin Fried, the DC-based Managing Partner of law firm SNR Denton.  Connette has long had an interest in public policy and litigation related to disabilities, health care and mental health. In his legal work, he has fought to protect the rights of people living with disabilities and challenged the living conditions and institutionalization practices in North Carolina and Tennessee. He is involved in several professional organizations and has also served on the Executive Board and as President of the National Patient Advocate Foundation. Connette’s volunteer work with disability groups stretches back more than twenty years, and he played a critical role in the merger of UCP and Easter Seals affiliates in North Carolina and went on to become Board Chair for the newly created Easter Seals/ UCP North Carolina and Virginia.

“On behalf of United Cerebral Palsy, and all of our affiliates, I am delighted to welcome Woody as our new Chair for our Board of Trustees,” said Stephen Bennett, former President & CEO of United Cerebral Palsy. “Woody has been a valued part of UCP for more than two decades, and his commitment and dedication to bettering the lives of people living with disabilities is inspiring. We look forward to his leadership in the years ahead.”

“It is an immense privilege to be selected for this position with such a great organization,” said Connette. “United Cerebral Palsy is internationally recognized as a leader in the disability community, and I will do my best to help create a better day for those living with disabilities every day.”

Connette is joined by three other volunteer leaders, including:

·       Ian Ridlon, who has been selected as the organization’s new vice chair.  Ridlon is general counsel and director of Legal Services at the Rhode Island Interlocal Risk Management Trust. Mr. Ridlon has been involved with United Cerebral Palsy on the state and national level for over 15 years.  On the state level, he has been the Board Chair for several terms and has also chaired two other non-profit organizations created by the affiliate that provide independent living facilities for low income individuals with developmental disabilities. On the national level, he has previously served on the Board of Trustees and is a recipient of the 2004 Chairperson’s Award.  He has also served on numerous committees and was previously the chair of the nominating committee and the by-laws committee. and has served as a Board member for UCP of Rhode Island

·       Mark Boles will serve as the organization’s treasurer.  He currently serves as Chief Executive Officer of Baylor Institute for Rehabilitation at Frisco (Texas). With nearly 30 years experience as a healthcare executive, he has been involved with United Cerebral Palsy on the local, state, and national levels for more than 20 years, having received the Ethel Hausman Volunteer of the Year Award in 2003 and the UCP Chairman’s Award in 2004.

·       Pamela Talkin will serve as secretary of the Board of Trustees.  Talkin was sworn in on July 16, 2001 as the tenth Marshal of the Supreme Court of the United States.  Talkin is the first woman to hold the position. She was elected to UCP Board of Trustees in 2011.

New Members

These new leaders are joined by five new distinguished Trustees who were elected at UCP’s international conference this past April.  They include:

·       Michael Burke Jr., a co-founder and principal of Thrive Office, an innovative, shared workplace community based in New York City.

·       Ruth Gullerud, who retired in May as the Executive Director of UCP of West Central Wisconsin, in Eau Claire, where she has worked since 1977.

·       Melvin “Chip” Hurley, an executive with Berkeley Research Group, LLC, and former chair of the board of UCP of Central Maryland.

·       Linda Maguire, co-founder and consultant with Maguire Associates, a research-based consulting firm that has served educational clients around the world for the past 29 years. She is currently the vice chair of UCP MetroBoston and has received much recognition for her work with the UCP network.

·       Rob White, the Chief Executive Officer of Cerebral Palsy Alliance in Sydney, Australia, who has decades of leadership experience in global civil rights movement for people with disabilities.

“We are grateful to these new officers and Trustees for agreeing to serve United Cerebral Palsy in such an important leadership role,” Bennett said.  “Our Trustees are one of the main reasons that UCP is able to serve hundreds of thousands of people with disabilities each year, and we are excited to begin a new year with their leadership contributions.”

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