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/.

#KnowMedicaid

 

As Google search results indicate, many more Americans have grown concerned about losing their (or a family member’s) Medicaid benefit. We at UCP are receiving an increasing number of inquiries about Medicaid and the services and supports it provides for many individuals with disabilities and their families.

 

Even without a pending health care bill in Congress, it can be overwhelming to navigate the process of accessing the funding and benefits necessary to receive the support needed so you or your loved one can live a life without limits. While there is no one way to simplify the process, there are ways to make it a bit easier. The tips and tricks below will help you in your conversations with Medicaid and other agencies.

 

When you’re done checking out our tips, you will also find a PDF guide with the contact information for Medicaid (and related agencies in all 50 states) at the bottom of this post.

 

Keep Records of All Conversations, and Be Sure to Seek Clarification When Necessary:

 

Whenever calling your state or any other entity) regarding services and supports, be sure to keep notes about your conversation including: who you speak with , what department they are in, what department they refer you to, and any other pertinent details.

 

This is really important in the case that there is any confusion or conflicting information during the process , because you will be able to provide past information about what you were told and when.

 

It is also a great idea to ask the person you are speaking to to follow up with an email, if possible; that way you are able to see their summary of the conversation, and open up a dialogue that may help in the future should there be any misunderstandings.

 

Remember That State and Federal Agencies Are Not Identical:

 

When working with Medicaid, or any other government program or agency, it is important to be aware of the difference between the agency in your state, and the federal agencies in Washington, DC.

 

While agencies can be connected, the state agency handles state programs and issues and the federal agency counterpart handles national ones. When getting information about services and supports, it is vital to differentiate between what is available and provided by your state, and what might also be available on the national level.

 

This is also key because these differences affect how programs are funded, and may alter the process required to become eligible. Sometimes programs may be jointly run on the state and national level, but it is still important to be aware of when you’re talking to, or about, your individual state versus when you’re looking at things on a national level.

 

Not All States Run Programs the Same Way, (or a Call Agencies by the Same Name):

 

Another reason it is important to be aware of the difference between state and federal programming is because the way programs, such as Medicaid, are administered can vary significantly from state to state.

 

Therefore, be sure to investigate how things are run in your specific state, and not go off of the experiences of an individual who may live someplace else. A program that is provided through the Department of Health and Human Services in one state may be provided through the Department of Welfare in another.

 

Before getting discouraged and thinking something doesn’t exist, always remember to try a different name or department, because you never know what it might fall under in your state.

 

Always Ask for Other Options:

 

Just because one program, grant, or service is not an option for you, doesn’t mean there isn’t something out there that can help with your situation. Even if you find out that the program you are looking into will not work (or be available) based on for your situation,, be sure to ask the person you’re speaking with if they know of any other programs that may be able to help.

 

When considering your options, it is also important to remember that different programs have different eligibility requirements. So, be sure to provide as much information as possible to determine if you are eligible for a specific program.

 

Obtaining services through Medicaid (or other agencies) is rarely a simple process, but we hope that these tips– as well as our guide of various state offices involved in the administration of services and supports for individuals with disabilities– will make your journey a bit easier.
Do you have any other tips or tricks you would like to add to the list? Let us know on Facebook or Twitter using the hashtag #KnowMedicaid. To learn more about Medicaid in your state, check out our resource guide.

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.

###

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 .

What You Need to Know About College as a Student with a Disability

The transition from high school to college can be both a scary and exciting time for every student. College is a whole new world, and unlike anything most students have yet experienced.

 

Before heading off to college, students have questions and concerns about their future. Most students probably wonder about their major, whether they will like the school they have chosen, and what their new friends will be like, but for students with disabilities, the questions can often be a little more complicated.

 

Students with disabilities may wonder about accommodations, accessibility, services and supports, and getting help with everyday needs. And these questions may not be easy to answer.

 

As someone who’s a former college student, and an individual with a disability, I wanted to share some of the things that I wish I had known freshman year in hopes that it may make your transition a little bit easier.

 

Self Advocacy Is Key:

Growing up, it was typically the responsibility of your parents, teachers, or other administrators to make sure you got the accommodations and supports you needed to be successful in school. But, in college, it becomes primarily your responsibility.

 

Self-advocacy is always important but becomes especially essential when navigating college. College is often the first time students have lived away from home, and it is important to remember that you are your own best advocate: there are lots of supports in place to help you be successful, but you have to be proactive and reach out so that the people around you know what you may, or may not need.

 

Most schools have Offices or Departments of Disability Services in place to help students with disabilities get the accommodations they need, such as note-taking support, extra time on exams, or any other reasonable academic accommodation, but nobody from the office is going to seek you out, especially if they don’t even know you’re there.

 

Make a point to become familiar with the services and supports that exist on your campus. Talk to the disability support staff to work on a plan for your accommodations to help ensure success from day one. You are in college now and, like your peers without disabilities, there are still people there to help you, but for the most part, you are in the driver’s seat now!

 

The Laws Are Different:

K-12 education for students with disabilities is mandated under the Individuals with Disabilities Education Act (IDEA), this means that students with disabilities are entitled to public education and that it is the responsibility of the school to see that all students are getting an appropriate education. Colleges don’t fall under IDEA, and therefore, are not required to make accommodations to the same degree as the public school system.

 

In college, students with disabilities are protected from discrimination, such as inaccessibility of buildings, under the Americans with Disabilities Act (ADA). Schools must provide reasonable accommodations such as notetakers or extra time on exams, but they don’t have any obligation to modify coursework to accommodate students with disabilities or provide additional supports such as assistance with personal care or activities of daily living to ensure a student is successful.

So, if you are, for example, a wheelchair user who needs help to get in and out of bed or perform other daily activities, the ADA requires your school to provide you with an accessible dorm room, but there is no legal obligation to provide you with an assistant or other types of personal care support.

 

This is important to know because it means that you will need to set up the supports you need on your own before you head off to school. Some schools have programs to help students with personal care needs, but this is not a requirement for all schools. Look into what your school offers to figure out what kind of supports may be available.

 

For more information about the difference in laws governing K-12 education and college check out the resources below:

 

https://umaine.edu/disability/accommodations-high-school-vs-college/

 

https://www2.ed.gov/about/offices/list/ocr/transitionguide.html

 

https://www2.ed.gov/about/offices/list/ocr/docs/auxaids.html

 

 

It’s Okay to Reach out for Help and Support:

If you’re feeling overwhelmed, or struggling more than you thought you would, there is absolutely no shame in asking for help. Mental and emotional well-being is just as important as physical health, and academic support.

 

Most colleges have a variety of services to support students from health centers, to counseling and other mental health services, and wellness programs, in addition to academic supports. Take advantage of the support and community that exists around you, and don’t be afraid to reach out.

 

Additionally, there are lots of groups and activities on college campuses, and many colleges even have organizations run by and for students with disabilities. These organizations may or may not be support oriented. Many of them may just be social groups, or groups focused on advocacy and activism.

 

Whether or not they are disability focused, student organizations and extracurricular activities can be another great place to find support in college.

 

 

Transition Is Not One-Size-Fits-All:

Everybody is unique, which means that everyone’s experience in transitioning from high school to what comes after will look, feel, and be, very different. Whether you’re planning to go to school far away, attend college close to home, or do something else after high school, it’s important to remember there is no right way to transition from high school to beyond.

 

Whatever you decide to do after high school graduation, focus on making sure that it’s the right option for you, rather than worrying about whether it’s what other people expect.

 

For more information you need to know,  check out the topics below:

What You Need to Know About Preventative Care and Disability
What You Need to Know About Sexual and Reproductive Health and Disability

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.

Changing Spaces Aims to Bring Access and Dignity to a Universal Experience

Nobody should have to lay on the floor of a public restroom. While this may seem obvious for some, individuals with disabilities and their families are not always afforded another option. This is because they are frequently faced with bathrooms being unsanitary, cramped, and often inaccessible.

Society has acknowledged the urgency for coat and purse hangers in bathroom stalls to maintain the hygienic safety and convenience for the individual using the restroom, however, often it seems that the same thought has not been considered for some individuals with disabilities. Many times, their caregivers have to change individuals on bathroom floors because there is no other option: the only changing table in most bathrooms is meant for babies. This is not only unhygienic, but also undignified.

Even if toilets are deemed accessible, many times they do not have necessary items for many individuals such as a lift, changing table, or an accessible and supportive toilet. This may fully prevent some caregivers from being able to provide adequate toileting care. Common and important activities such as visiting family or traveling outside the home may become a truly daunting logistical challenge.

Individuals with disabilities and their caregivers are working at the state level in Georgia (Changing Spaces GA), and in other places across the world, to improve public restrooms so that they are accessible and dignified for all methods of toileting. Advocates have two very clear solutions: rather than only having baby-sized changing tables, adult-sized changing tables would be suitable for all age groups. Furthermore, a ceiling hoist would actually reduce the risk of injury when lifting people onto a table, and it does not take up any extra space in the stall (you can view the video from Changing Spaces GA here).

In a society where individuals with disabilities still experience many barriers, being able to change in a toilet stall with dignity should not be another problem that individuals have to face. Changing Spaces is more than a campaign for hygiene, it is about dignity for the individual and those who love them. It is also about providing individuals with disabilities and their caregivers access to a space that has just as much access as for anyone else, allowing them to live life more freely and without barriers; and most importantly, letting them be who they want to be.

To learn more, visit Changing Spaces GA or follow along with the discussion on social media using the hashtag #OFFTHEFLOOR.

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 Remembers Jack Schillinger

Gloria_Jack

On January 4, 2017, UCP lost a great friend, volunteer, supporter, leader and advisor with the passing of Jack Schillinger at the age of 96. Jack was the “face” of the Bellows Committee that he Chaired until recently, was Chair of the UCP Board of Directors in 1991, and was member of the Finance Committee for many years. In 2015, UCP honored Jack with the Chair Award at the Annual Conference in Chicago.

Jack was a huge part of UCP, since 1955,
and we can never thank him enough for his dedication to UCP and to the lives of people with disabilities.

Our thoughts and prayers are with the family at this difficult time. Jack’s obituary can be found within his guest book. To add a note of sympathy, give your condolences to the family, and to share your memories of Jack, please visit the Guest Book.

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