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

 

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

UCP Launches “Speak for Yourself,” a PCORI-Funded Project to Establish a Patient-Centered Research Network for Individuals with Disabilities

FOR IMMEDIATE RELEASE                                  Contact: Randi Moore, (202) 494-4638

Washington, D.C. (May 3, 2016) – United Cerebral Palsy (UCP) has launched Speak for Yourself, a two-year project funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award to address the various barriers to access that discourage or prevent individuals with disabilities from participating in medical research.

Speak for Yourself is a movement that will build a network of individuals with disabilities who are trained and empowered to become directly involved in medical research that improves their health outcomes.

“People with disabilities have long expressed the desire not only for more opportunities to participate in research, but for a voice in the decision-making around the ‘what’, ‘how’, and ‘why’ of disability-focused research. Speak for Yourself aims to empower people with disabilities to work alongside researchers to ensure that the future of research meets the needs of real people,” said Stephen Bennett, UCP’s President and CEO.

Speak for Yourself will include various opportunities for online engagement and access to resources on research participation. Each year of the project will culminate in a one-day convening bringing together advocates and researchers to collaborate on how to build a more dynamic relationship.

“To promote health equity among people with disabilities, we need to pursue research that is meaningful to those most affected. To do so, people with disabilities must have a say in the research process. Speak for Yourself is a part of the solution to transform science and promote patient-centered outcomes,” said Katherine McDonald, PhD, Associate Professor of Public Health at Syracuse University.

UCP believes that relevant and well-informed patient-centered clinical research is essential to advancing healthcare access, quality, and choice for individuals with disabilities. A patient-centered approach to research that encourages individuals with disabilities to provide input on the gaps in evidence, best practices, and direction of disability-focused research is central to creating a life without limits

More information about Speak for Yourself can be found at http://mylifewithoutlimits.org/speak-for-yourself/

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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 a network of 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. 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. For more information, please visit http://www.ucp.org.


About The Patient-Centered Outcomes Research Institute

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.

 

UCP Wants To Hear From YOU In 2016!

Happy New Year!

Get. Excited!

New Years is many things. For me, it is the time to remember successes of the past year and the time to get excited for the year to come. It’s all about…time. Counting down. Counting towards.

I’m Jennifer McCue, UCP’s Director of Advocacy. I’m new here to UCP – just a few months in. Before we talk about the new to come to UCP in 2016, let’s reflect quickly on what has happened in 2015. You can learn in detail here, but in a snapshot, here’s what happened: 

  • The 25th Anniversary of the American with Disabilities Act celebrated 25 years.
  • Congress passed a funding bill that included provisions to fund caregiving and respite care programs.
  • Provisions to cap reimbursement for complex rehab technologies were delayed for a year.
  • Education legislation was passed that includes improved provisions for the disability community.

In a year, where successes were few and far in between, it seems the needle may be moving. Consider me a skeptic, but while there is indeed reason to be excited and reason to be hopeful there is a greater reason and necessity to want more.

On the horizon for 2016 we have a Congressional election. Efforts are underway to implement education and reimbursement provisions along with housing reform and home and community based services, provisions for personal care attendants and caregivers are in motion and independent living efforts and activities are being put forward by the Administration for Community Living.

We are also going to create a platform here at UCP for you.  A place to be heard, a place for information, a place to connect, a place to tell your story and use it towards change.  A place for me to know you.

With all that is happening here in DC, and with you at home we will be sending you a series of communications to update and engage but also to ask you – what is important to YOU?  What would you like to see happen?  What NEW do you want to see this YEAR? You can tweet us (we’re @UCPNational) or tell us on Facebook using the hashtag #UCPNEWYEAR!

A lot is on the horizon and we will need you, your stories, your voices, and your support to make sure we are on the path towards a life without limits. We are counting on you.

So, tell me… what does UCP mean to you? 

Happy New Year!

Talk soon.

UCP Gets A “Sneak Peek” Of The Series “Born This Way!”

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John Tucker, one of the stars of “Born This Way”, speaking at Rayburn House Office Building in Washington, DC.

UCP had the opportunity to check out a sneak peek of the new reality series premiering on A&E Network this month. “Born This Way” follows the live of seven adults living with Down syndrome living in Los Angeles, California.

You watch as they navigate life and all it’s complexities, such as the relationships with their parents, finding love, gaining their independence, planning their futures and following their dreams.

The show tackles issues surrounding language, culture, and stigma in regards to the way we look at individuals with intellectual and developmental disabilities, in a way that really hasn’t been on television before. The show is an honest take on how they live their lives and it’s refreshing to see people with disabilities discussing their lives as they know them to be.

We had the pleasure of meeting one of the stars of the show, John Tucker, a 28-year old man who’s energy is contagious and his passion is music. He’s an aspiring rapper. 

“There is a freshness and honesty in the way these young adults lead their lives; something we could all learn from them.” said Executive Producer Jonathan Murray. 

 

“Born This Way” premieres December 8, at 10:00 PM EDT/ 9:00 PM Central on A&E