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/

Transition Is…

 

Sometimes, unexpected or scary but also real and exciting

 

There are specialty clinics and hospitals throughout the country to address the unique needs of children with disabilities like cerebral palsy, but the same is not true for adults. Once people with disabilities reach the age of 18 or 21 they often have to stop seeing their pediatric providers, only to find there is no adult provider to take their place.

 

This is a major issue that affects young adults and adults with disabilities throughout the country, and contributes to a range of health inequalities and other issues. As we have addressed before, transitioning from pediatric care to adult care can be particularly difficult if your new doctor has little to no familiarity with disability.

 

Adults with disabilities need access to the same care as other adults, but they also need providers who are familiar with the unique needs that may come along with disability, and that is when young adults with disabilities can feel as though they’ve entered a void. However, one UCP affiliate is working to bridge that gap in a particularly creative and comprehensive way.

 

UCP of Minnesota/Gillette Specialty Children’s Hospital is the home of Gillette Lifetime, a clinic for patients with lifelong disabilities such as cerebral palsy and spina bifida who are ages 16 or older.

 

Kathy Lindstrom, an Advanced Practice Registered Nurse, at the Lifetime Clinic, says it grew out of an unmet need in the community.  Lifetime Clinic’s Transition Program started as, “a grassroots movement put together based on patient needs. “

 

Kathy Lindstrom Advanced Practice Registered Nurse, at the Lifetime Clinic

Kathy Lindstrom Advanced Practice Registered Nurse, at the Lifetime Clinic

 

 

Easier, with the right resources and support

 

The services at Gillette Lifetime Transition Clinic merge medical needs with the unique psychological and social needs of transition-aged young adults with disabilities. As Lindstrom explains “everything seems to change when patients reach the late teenage years; it’s not just medical, but in all aspects of their lives.”

 

Lindstrom says, “Legal decision making becomes an issue, [so does vocational] planning, post high school planning and discussions about future living arrangements.  Parents are bogged down with meeting the challenges of daily life, and sometimes it can be hard to develop a vision for the future… and so transition sneaks up on families.”

 

Parental involvement in the process often shifts at this stage, so it’s also important to prepare both parents and young adults for this change.

 

Transition is not a simple process that happens overnight, or automatically, on a patient’s 18th birthday. Lindstrom understands that it can be hard for patients to come to the clinic for the first time, as many of them have had the same providers for their entire lives, and it can be hard to let go.

 

Lifetime makes this transition a little bit easier by allowing patients to transfer some care to adult providers, while continuing to collaborate with other specialty providers for other aspects for a period.

 

During their first visit to the clinic, patients meet with Lindstrom and her colleagues to discuss transition, and outline the issues that are most important to them. These appointments are conversations, not exams, and take place in a conference room, as opposed to an exam room. The appointment gives patients, and their families, an opportunity to discuss any questions or concerns they may have, and to get a feel for the services available at Lifetime.

 

 

About choices, and coordination

 

Lifetime is focused on specialty medical needs, and is not a primary care facility. Lindstrom offers the following advice to any individuals with disabilities looking for primary care providers:

 

  • Meet with the family Primary Care Provider (PCP) and talk about the potential of becoming a patient. If the doctor already sees the rest of the family, they might be a good start for patients with disabilities as well. She encourages patients to integrate into their family’s practice whenever feasible.

 

  • Arrange an advanced meeting with the PCP and see how accessible the facility is before becoming a patient in the practice.

 

  • If at first you don’t succeed, try try again. Lindstrom cautions that you may not click with the first provider you meet with, but that doesn’t mean you won’t find somebody who works for you.

 

  • Your insurance will affect your options for a PCP, so remember to check first to make sure your preferred provider is covered!

 

Lindstrom also encourages primary care providers to connect with a patient’s specialty care providers. Gillette operates a telehealth triage line for all patients and their providers, regardless of age. If a primary care provider is unsure of how to treat a patient, they can reach out and communicate with other members of the patient’s care team.

 

In addition to medical care, Gillette Lifetime supports patients with the social aspects of transition such as recreation, community integration and helps prepare them for changing relationships with their family and friends, even giving them space to talk about the potential of romantic relationships.

 

Transition is difficult for every young adult, but when you have a disability, you may not know where to go, and you may have a unique set of questions that you feel like no one can answer, which is why transition clinics like Gillette Lifetime’s Transition Clinic are so important.

 

Learning more

 

There are several clinics that specialize in current medical recommendations for young adults with cerebral palsy throughout the country.

 

If you are located outside of Minnesota or the Midwest, and would like to see if there is a transition clinic near you, please be sure to check out our latest guide on healthcare for adults with cerebral palsy and related disabilities for clinics and additional resources that may be helpful in the transition from pediatric to adult health care.

 

Patient with a practitioner at the Lifetime Clinic

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 Celebrates Health Care Law Decision

FOR IMMEDIATE RELEASE
 
CONTACT: 
Kaelan Richards: 202-973-7175, krichards@ucp.org
 

UCP CELEBRATES HEALTH CARE LAW DECISION


Leading disability organization praises Supreme Court decision and implications for people living with disabilities

 
Washington, DC (June 28, 2012) – United Cerebral Palsy (UCP) responded to the Supreme Court of the United States’ ruling on the Patient Protection and Affordable Care Act.
 

The Supreme Court’s ruling today affirms that the Affordable Care Act is the law of the land, and will ensure that Americans with pre-existing conditions will have access to the care they need. For individuals living with disabilities, it provides many critical benefits, most notably removing annual and lifetime caps on insurance coverage and expanding minimum benefits coverage to include more services and supports. The decision also maintains the Affordable Care Act’s expansion of Medicaid, enabling more Americans to have access to health care services, including individuals who need long-term care services.

“The Affordable Care Act has already made a significant difference in the lives of millions of Americans, including those living with disabilities. Today’s ruling is an affirmation that all Americans, and especially those living with disabilities, should have access to the care that they need. This decision means that individuals cannot be discriminated against because of a pre-existing condition— and for the disability community, affirms the definition of equality as set forth in the Americans with Disabilities Act,” said Stephen Bennett, UCP President & CEO. “Today’s decision is a clear victory for Americans living with disabilities. UCP strongly supports the Affordable Care Act and will keep working to ensure its implementation eliminates disparities and guarantees equality for all Americans.”

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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 www.ucp.org.

Representatives from Interfaith Religious Community & Disability Organizations Host Web Chat Discussing Importance of Medicaid for People with Disabilities

Media Advisory

Contacts:
UCP: Lauren Cozzi, 202-973-7114, & Alicia Kubert Smith, 202-973-7168, AAPD: Lara Schwartz, 202-521-4309, lschwartz@aapd.com

Representatives from Interfaith Religious Community & Disability Organizations Host Web Chat Discussing Importance of Medicaid for People with Disabilities

Washington, DC (November 8, 2011) – the American Association of People with Disabilities (AAPD), United Cerebral Palsy (UCP), and the Interfaith Disability Advocacy Coalition (IDAC) – a diverse, nonpartisan coalition of religious and religiously affiliated organizations whose core spiritual values affirm the rights and dignity of people with disabilities – will host a public web chat to discuss current deficit reduction strategies while representing a broad cross-section of the nation’s various faith traditions on Thursday, November 10 at 1:30 p.m. EST.

As the US Congress Joint Select Committee on Deficit Reduction (the “Supercommittee”) continues to deliberate and craft proposals concerning the federal budget, it is important that the voices of the faith community be a vibrant part of the national conversation. Americans of many faiths support policies and programs that promote independence and dignity for people with disabilities. Medicaid is a tool that enables millions of Americans with disabilities to enjoy these freedoms, including contributing to their communities, families and congregations.

Participating IDAC members will share their unique perspectives about why Medicaid must be preserved for people with disabilities. The public can engage in the web chat by submitting questions to interfaithchat@aapd.com and logging in to engage in the conversation.

 WHO:            Hosted by AAPD, UCP & IDAC. Participants include Mark Perriello,
                        AAPD President and CEO; Khizer Husain of American Muslim Health
                        Professionals; and the following IDAC members:

  • Meg Cooch, Director of Policy and Advocacy, Lutheran Services in America Disability Network, “When thinking about deficit reduction and balancing the budget, we must apply our faith values to possible proposals. Medicaid allows people with disabilities the opportunity to be full participants in our society by providing critical services and job supports.”
  • David Feinman, Senior Legislative Associate, the Jewish Federations of North America, “Considering the challenges the ‘Supercommittee’ and the rest of the Congress face coming to a consensus on most issues, it is critical that they hear from people who want to have a constructive conversation.” 
  • Maggie Mitchell Siddiqi, Islamic Society of North America, “In Islam, we are instructed to protect the dignity of every human being and provide help for those in need. As a Muslim, I believe in the importance of preserving safety net programs like Medicaid, which help people maintain their dignity and self-sufficiency.”
  • Khizer Husain, Member, Task Force on Health Affordability, American Muslim Health Professionals, “My faith compels me to advocate for the neediest, particularly if it involves sacrifice.”


WHAT:         
Web Chat: Protecting Medicaid Across Faith Lines for People                
                       with Disabilities

WHEN:         Thursday, November 10, 2011 at 1:30 p.m. EST

WHERE:       http://bit.ly/smog5m

EMAIL:         Anyone may submit questions to interfaithchat@aapd.com

To learn more about AAPD and UCP’s joint efforts to ensure quality healthcare and access to care, please visit America’s Supercommittee at www.ucp.org/public-policy/america-s-super-committee.

About United Cerebral Palsy
United Cerebral Palsy (UCP) educates, advocates and provides support services 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 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 visitwww.ucp.org.

About the American Association of People with Disabilities (AAPD)
The American Association of People with Disabilities is the nation’s largest cross-disability organization. We promote equal opportunity, economic power, independent living, and political participation for people with disabilities. Our members, including people with disabilities and our family, friends, and supporters, represent a powerful force for change. Visit www.AAPD.com for more information. 

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Disability Groups Emphasize Need for Quality Care & Access to Care, in Lead Up to the Congressional Supercommittee Hearing about Debt Reduction Plans on Tuesday

FOR IMMEDIATE RELEASE

UCP Contacts:
Lauren Cozzi, 202-973-7114, lcozzi@ucp.org 
Alicia Kubert Smith, 202-973-7168, akubertsmith@ucp.org

AAPD Contacts:
Lara Schwartz, 202-521-4309, lschwartz@aapd.com
Frankie Mastrangelo, 202-521-4308, fmastrangelo@aapd.com

Disability Groups Emphasize Need for Quality Care & Access to Care, in Lead Up to the Congressional Supercommittee Hearing about Debt Reduction Plans
on Tuesday

The Supercommittee decision cannot only be about saving money;
it must be about ensuring access to quality care

Washington, DC (November 1, 2011) – United Cerebral Palsy (UCP) and the American Association of People with Disabilities (AAPD) oppose some measures in the previously-released deficit reduction proposals, which will be discussed at a hearing of the Supercommittee on Tuesday, November 1 at 1:30 p.m. ET. Former Senator Alan Simpson and Erskine Bowles of The National Commission on Fiscal Responsibility and Reform, Dr. Alice Rivlin and Former Senator Pete Domenici of the Bipartisan Policy Center’s Debt Reduction Task Force are scheduled to testify.

“Changes to Medicaid in the Simpson-Bowles and Rivlin-Dominici proposals would put Americans with disabilities at risk. We urge Members of Congress and the Administration to stand firm against any measures that would jeopardize those with disabilities,” said Stephen Bennett, UCP President & CEO.

“Medicaid provides me with in-home personal care services so I can choose to live in my home instead of an institution. Members of Congress must keep the millions of Americans like me in mind as they determine the fate of Medicaid,” said Robert Coward, a quadriplegic and member of a shadow Supercommittee — called “America’s Supercommittee” — established by UCP and AAPD to put a human face on Medicaid.

“Reducing access to care for Americans is not an option, but that doesn’t mean that we can’t reduce costs,” said AAPD President and CEO Mark Perriello. “To reduce costs without limiting eligibility, we need to ensure that programs are operating efficiently. Some of the proposals being considered today place too much of the cost-cutting burden on people with disabilities,” he added. 

The Bowles-Simpson commission plan proposes repealing or reforming the CLASS Act, which establishes a voluntary program for workers to purchase long-term care insurance and supports. UCP and AAPD oppose repeal and urge members of Congress to reject any attempts to do so. 

One proposal would require persons eligible for both Medicaid and Medicare to enlist in managed care programs. Many managed care programs have had success. Not all programs are equal, however. An acceptable plan will employ the best practices used by effective managed care plans and ensure that individuals have access to providers and quality care.

UCP and AAPD favor changes to save money in the Medicaid program that don’t adversely impact recipients, such as reducing prescription drug costs and enabling more people with disabilities to stay in their homes instead of costlier nursing homes. While both of the previous debt reduction plans being highlighted at the hearing contain measures opposed by UCP and AAPD, the organizations endorse the proposal in the Bowles-Simpson commission plan to extend the Medicaid drug rebate to those individuals who are eligible for both Medicare and Medicaid.

About United Cerebral Palsy
United Cerebral Palsy (UCP) educates, advocates and provides support services 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 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 the American Association of People with Disabilities (AAPD)
The American Association of People with Disabilities is the nation’s largest cross-disability organization. We promote equal opportunity, economic power, independent living, and political participation for people with disabilities. Our members, including people with disabilities and our family, friends, and supporters, represent a powerful force for change. Visit www.AAPD.com for more information.

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LONG-TERM CARE PROGRAM SHOULD BE IMPROVED, NOT SCRAPPED

LONG-TERM CARE PROGRAM SHOULD BE IMPROVED, NOT SCRAPPED

Congress and Administration Should Make Adjustments to Make Program Financially Sound

Washington, DC (October 27, 2011) – United Cerebral Palsy (UCP) and The American Association of People with Disabilities (AAPD) oppose efforts in Congress to repeal the CLASS Act (the Community Living Assistance Services and Supports Act).  At a hearing yesterday the Assistant Secretary for Aging Kathy Greenlee committed to providing Congress with information on the changes in the CLASS Act law that would enable the Administration to design a program that would be financially sound. UCP and AAPD call upon Congress and the Administration to get to work and make the CLASS Act’s benefits available to the millions of people who need them.

“President Obama should veto any legislation that would repeal the CLASS Act. Instead, the President should urge Congress to make it work. Scrapping the program would be unacceptable. America has a long-term care crisis that we must solve. The CLASS program would make long-term care insurance accessible. Without it, millions of Americans will be unable to afford care they need,” said Mark Perriello, President of the American Association of People with Disabilities.

We should strengthen, not weaken, our country’s safety net. People with disabilities are already struggling. Many states are cutting back Medicaid benefits and it will get much worse if Congress slashes Medicaid funding in the name of deficit reduction,” said Stephen Bennett, President and CEO of United Cerebral Palsy

About United Cerebral Palsy
United Cerebral Palsy (UCP) educates, advocates and provides support services 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 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 the American Association of People with Disabilities (AAPD)
“The American Association of People with Disabilities is the nation’s largest cross-disability organization. We promote equal opportunity, economic power, independent living, and political participation for people with disabilities. Our members, including people with disabilities and our family, friends, and supporters, represent a powerful force for change.” Visit www.AAPD.com for more information.

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