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/

Thoughts on the Future of Healthcare

This blog was written from the personal experience of UCP’s Winter Intern surrounding the future of healthcare. This post is intended to express their personal thoughts and experiences. 

On February 7, 2017, I had the opportunity to attend my first press conference as United Cerebral Palsy (UCP)’s programs and development intern. The conference was held by the Committee on Education & The Workforce at the U.S. Capitol. The speakers included several Members of Congress, as well as school nurses and parent advocates. The experience was unforgettable, marking the first time I actually got to witness what goes on behind the scenes of health policy.

As an aspiring primary care physician, health care policy has always meant more to me than simple legislation. When policy changes are made, it directly impacts how doctors can perform their care and how patients can access it. I think it is extremely important that people understand and take charge of their own health, and this is made possible through expansions in health education and health access. Being at the Capitol, and feeling immersed in the actual political process with regards to health, showed me how important it is to continue advocating for these goals– and for my future patients.

One of the stories that particularly touched me at the event was that of parent advocate Anna Crone. She spoke to the room about her daughter who was born with type 1 diabetes. Part of her treatment requires receiving daily insulin injections, and having her finger pricked up to 10 times a day to check her blood glucose levels. In 2012, before the ACA was fully implemented, Crone’s husband had lost his job and was attempting to shop for private insurance. However, he was unable to find anything due to the fact that most insurance companies denied coverage at any cost for those living with pre-existing conditions. He was eventually able to find a job and get back on private insurance, however the family said they felt a significant ease of mind knowing that their daughter would never fully lose coverage thanks to the ACA.

From this story, along with others, I began to truly understand the degree to which the ACA has impacted millions of Americans. As in the case of Anna’s husband, life may get in the way when one least expects it, and it is important to know that you or those you love will still be protected. I am so grateful to have had the opportunity to better understand the complexities of our government; and, I know that this will serve to make me a better health advocate for not only individuals with disabilities, but for all.

UCP and the National Council on Disability – “First Responders and Disability”

On December 9, 2016, UCP and the National Council on Disability joined together to host a day of conversation surrounding first responders and the disability community. Bringing together diverse perspectives from across the country, the day was a raw and honest look at the way law enforcement and other members of the first responder community interact with those living with disabilities.

Watch the footage (captioned) below:

 

View the Program Agenda

View the Event Summary here

 

We’re Partnering With The Mighty!

We’re thrilled to announce a new partnership that will bring United Cerebral Palsy’s resources to the front of The Mighty‘s wide-reaching readership. We will now  have a growing home page on The Mighty , and appear on many stories on the site, allowing us to get many more people involved with our organization.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness, and disability. It is estimated that 764,000 children and adults in the U.S. manifest one or more of the symptoms of cerebral palsy, and that 1 in 5 Americans live with some form of disability. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We’re dedicated to providing comprehensive support and community for children and adults living with cerebral palsy, as well as other disabilities, and their families. With this partnership, we’ll be able to help even more people.

We encourage you to submit a story to The Mighty and make your voice heard.

Here’s an example of the kind of stories you’ll find on The Mighty: Tommy Hilfiger Launches Adaptive Collection for Children With Disabilities

UCP to Host Mandela Washington Fellow

 

 

 

UCP SMALL                   NMF LOGO

 

 

Contact:                                                                                  FOR IMMEDIATE RELEASE

Ellie Collinson                                                                                     August 8, 2016
ecollinson@ucp.org
202-973-7109

 

UCP welcomes Tobiloba Ajayi as a part of the Mandela Washington Fellowship for Young African Leaders Initiative.

Washington, DC (August 8, 2016) – United Cerebral Palsy is pleased to announce that they have been chosen as a host for the 2016 Mandela Washington Fellowship for Young African Leaders Initiative. Tobiloba Ajayi, a Nigerian attorney and cerebral palsy advocate, will be joining the UCP staff for six weeks in order to polish her leadership skills and foster professional growth as part of her Professional Development Experience.

 

The Mandela Washington Fellowship, a key piece of President Obama’s Young African Leaders Initiative (YALI), equips young African leaders with the opportunity to engage in leadership training, professional opportunities, networking, and community support. Fellows are selected based on their extensive record of accomplishment in promoting and innovating positive change throughout their community in one of the 49 countries in Sub-Saharan Africa. After the Fellows attend a six-week Academic and Leadership Institute and meet with President Obama in Washington, DC, they will join private businesses, NGOs, and government agencies across the United States for an additional six week practicum. Here, the 100 Fellows in the program are granted a unique opportunity to develop a mentorship that will continue to assist them even as they resume their leadership development back home.

 

At United Cerebral Palsy, Ajayi will be working closely with UCP’s Program Department on the creation of international resource and emergency preparedness guides for people with disabilities.

 

To learn more about UCP and the Mandela Washington Fellowship program, visit www.ucp.org or yali.state.gov.

 

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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 broad range of disabilities. Together with over 70 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people 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 www.ucp.org.

 

About Mandela Washington Fellowship

The Mandela Washington Fellowship for Young African Leaders is a U.S. government program that is supported in its implementation by the International Research & Exchanges Board (IREX). For more information about the Mandela Washington Fellowship, visit yali.state.gov and join the conversation with #YALI2016.

UCP Responds to Attack at the Tsukui Yamayuri-En facility in Japan

We are deeply saddened by the events that took place at the Tsukui Yamayuri-En facility in Sagamihara, Japan early Tuesday morning. Our hearts and thoughts are with the families and loved ones of the 19 victims as well as the 26 survivors who were injured in the attack. Violence of this magnitude is shocking, particularly when it appears that the attacker was targeting people with disabilities. We at UCP, and throughout our affiliate network, believe strongly in our mission, and that life for people with disabilities and their families should be one that is free of violence.

Summary of SSA Comments

 

Recently, United Cerebral Palsy submitted comments regarding the implementation of the National Instant Criminal Background Check System (NICS) and the potential impact on individuals with mental disabilities.  

 

The Notice of Proposed Rulemaking concerning “Implementation of the NICS Improvements Act of 2007” is a proposed rule with no solid foundation. It incorrectly assumes that there is a connection between an increased risk of engaging in gun violence and having a representative payee to manage one’s Social Security benefits due to an impairment found on a “mental impairment” listing.

 

Four main reasons to urge Social Security Administration (SSA) to withdraw the proposed rule and why United Cerebral Palsy opposes it:

 

First, the National Instant Criminal Background Check System (NICS) requires the reporting of an individual to the FBI NICS database if they “lack the capacity to contract or manage his own affairs” as a result of “marked subnormal intelligence, or mental illness, incompetency condition or disease.” Having a representative payee does not meet this standard.

 

Second, this would create an ineffective strategy to address gun violence. It assumes that those with mental impairments are potential perpetrators of gun violence. It would create a false sense that meaningful action has been taken to address gun violence.

 

Third, this would perpetuate the incorrect association of mental disabilities with gun violence. This could dissuade people with mental impairments from seeking appropriate treatment or services, or from applying for financial aid and medical assistance programs.

 

Fourth, it would create new burdens on the SSA without providing new resources. This proposed rule would divert scarce resources away from the core focus of the SSA.  

 

See the formal comments here.

 

 

 

The Achieving a Better Life Experience Act of 2014 (ABLE)

This post was written by UCP intern Katie Tung in collaboration with UCP’s Director of Advocacy, Jennifer McCue. 

There has been a lot of activity around the Achieving a Better Life Experience Act (ABLE) of 2014. To help you understand the legislation and it’s impact we’ve created a quick summary sheet. As always, if you have additional questions please reach out and let us know.

What it is:

The Achieving a Better Life Experience Act of 2014 (ABLE) allows individuals and families with disabilities to save money in a separate tax-free account that does not negatively affect their eligibility to qualify for federal support programs, most specifically Medicaid and Social Security Benefits. These savings supplement the individual’s current benefit plans and do not disqualify their eligibility to receive federal benefits, unless the benefits are related to housing expenses or the individual has ABLE accounts exceeding $100,000. Medicaid services can be retained regardless of how much is in the accounts.

The purpose of ABLE accounts is to relieve the financial stress caused by the cost of disability-related services. In additional to federal benefits, the assets in ABLE accounts can be used to cover any expense related to the disability of the individual.  These expenses would include but are not limited to: education, transportation, housing, assistive technology, health services and prevention costs. If the individual were to die with assets still in the account, legislation requires the remaining funds to be paid to the state to reimburse for Medicaid benefits.

These accounts would be known as 529-ABLE accounts or 529A. Assets must be added in after-tax dollars but can be withdraw tax-free, similar to 529 college savings accounts. Donors can add up to $14,000 per year, with maximum total contributions totaling at $100,000.

Ohio and Tennessee are the first to have opened ABLE accounts to the public and Nebraska will be opening their program on June 30th. Florida will be enrolling their plan on July 1st. Since individual states are in charge of regulating their ABLE programs, enrollment fees and investment options may vary slightly.

Proposed Improvements:

The ABLE Age Adjustment Act was introduced in March 2016 to raise the eligibility age to create an ABLE account from 26 to 46 years old. The current legislation requires the individual to have developed their disability before the age of 26. By raising the onset age, ABLE could better accommodate individuals who acquire disabilities later in life, such as disabled veterans, spinal cord injuries, heart failure, or other later-developing disabilities.

The ABLE to Work Act would allow individuals with a disability who are employed to personally contribute to their ABLE account. In addition to the $14,000 that can be contributed by parents or guardians, the beneficiary would be able to contribute funds up to the federal poverty level, currently $11,770 per year. Individuals would still qualify for Savers Tax Credit, a tax credit for individuals of low-to-moderate income saving for retirement.

The ABLE Financial Planning Act moves to allow families to rollover savings from their child with a disability’s 529 college saving account to an ABLE account and vice versa. This would allow families to draw previous college savings and put it in their child’s ABLE account without suffering from any taxes. It would also allow families to later draw from ABLE accounts to put into their child’s college savings account.

 

Outline of ABLE Act – http://crenshaw.house.gov/index.cfm/able-act

Ohio’s ABLE program (STABLE) – http://www.stableaccount.com/

Tennessee’s ABLE program – http://www.abletn.gov/

Definitions and qualifications for Savers Credit – https://turbotax.intuit.com/tax-tools/tax-tips/Taxes-101/What-Is-The-Savers-Credit-/INF15617.html

ABLE Age Adjustment bill – https://www.govtrack.us/congress/bills/114/hr4813

ABLE Financial Planning bill – https://www.govtrack.us/congress/bills/114/hr4794

ABLE to Work bill – https://www.govtrack.us/congress/bills/114/hr4795