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.

Legislative Update: January 2016

As we roll into the New Year, we wanted to update you quickly on a few policy issues that wrapped up in the end of the year and will be on our radar throughout 2016: 

 

Caregiving and Respite Care

The issue of caregiving, and providing resources and supports to those who receive and those who provide care is an issue we will continue to invest and pay attention to through iStock_000012685951XSmall2016. To end the year, Congress showed support for Respite Care and Caregiving by passing the Lifespan Respite Care Act  and providing increased funding for the National Caregiver Support Program. Included in the end of the year bill passed to fund the Federal Government was a provision that increased funding for the National Caregiver Support Program by $5 million and Lifespan Respite received an additional $1 million! This is real movement for supporting family caregivers.  In the next months we’ll update you on what’s next for caregiving policy and programs and what you can do to help ensure these programs continue to grow. 

 

Education

In December, Congress passed and the President signed Every Student Succeeds Act (ESSA), which goes farther to assist students with disabilities, then No Child Left Behind did.  The new bill incorporates data and new knowledge about how to most effectively teach students with disabilities so they can successfully graduate and become post high school career/college ready. It also ensures accommodations for assessments for students with disabilities; requires local education agencies to provide evidence-based interventions in schools with consistently underperforming subgroups (including students with disabilities), requires states to address how they improve conditions for learning including reducing incidents of bullying and harassment and overuse of discipline practices and reduce the use of aversive behavioral interventions (such as restraints and seclusion). Moreover, this new legislation significantly shifts authority to make very important education decision to the states and school districts. Throughout 2015, UCP participated in meetings, signed letters of support and worked with stakeholders to ensure the bill would strengthen provisions to ensure that all students have the opportunity to receive a quality education.  This bill is one we do support.  Now, over the course of 2016, we will be updating and reaching out to you to ensure that state level practices being put forward reflect what is best for those living with and impacted disabilities.  

 

Complex Rehabilitation Technology

Coverage and reimbursement for Complex Rehabilitation Technologies is an issue that we’ve been working with you, and with others here in D.C. on for the past year.  Specifically, we have been concerned about the Centers for Medicare and Medicaid implementing a provision to restrict access to complex and critical wheelchair components and accessories. The provision was set to go into effect on January 1, 2016.  In a show of support for access to these critical technologies — Congress included in S. 2425, the “Patient Access and Medicare Protection Act” a one-year delay preventing CMS from implementing this restrictive provision!  

While Congress did not include a permanent fix for the problem this one-year delay provides UCP, along with others in the community, the opportunity in 2016 to further our work on the wheelchair accessories issue and in establishing needed improvements overall for reimbursement of complex rehabilitation technology within Medicare and other health insurance programs. We will continue to update and talk to you over the course of the year on how to engage on this important issue!

 

Workforce

In the next few weeks, each of the 50 states will be releasing their Workforce Innovation and Opportunity Act plans for public review and comment. Last year, a new law called the Workforce Innovation and Opportunity Act (WIOA) was passed. This new law is vital for the 1-in-5 Americans who have a disability, as it requires the entire workforce system to become accessible for people with disabilities.

Every state must create a Unified Integrated State Workforce Plan before March 2016. Once a state has completed their plan, they must publish it online. There is an opportunity for organizations to review their state plan and for public comment about the ways each respected plan can help people enter the workforce. This means a state plan that will be inclusive of the most integrated job opportunities for people with disabilities.

 

We are working with others in the community to create tools and guidance for our affiliates and individuals to submit comments and will circulate in the coming weeks.

 

March is National Developmental Disability Awareness Month

March is National Developmental Disabilities Awareness Month. We will be collaborating with other disability organizations to promote a social media campaign to highlight the many ways in which people with and without developmental disabilities come together to form strong, diverse communities. The goal will be to raise awareness about the inclusion of people with developmental disabilities in all facets of community life, as well as awareness to the barriers that people with disabilities still face in connecting to the communities in which they live.

Stay tuned for more information, including dates for webinars on how to become involved, tools for posting on social media and more information on how to engage and leverage this campaign!

UCP Responds to Shooting at Inland Regional Center

In the wake of the most recent mass shooting in San Bernadino, California, United Cerebral Palsy offers our condolences to the victims, the staff at Inland Regional Center and the entire community that has been impacted by this senseless violence.

Any event like this is shocking, but this particular incident hit close to home as it involved Inland Regional Center. The center serves more than 30,000 people with developmental disabilities in two counties. Hundreds of employees there provide funding, case management and referrals to agencies such as United Cerebral Palsy of the Inland Empire and other sister organizations in the area.

Much remains to be learned about the identities of the 14 people who were killed and the others who were injured. Staff and clients of UCP of the Inland Empire were not involved. However, they have frequent contact with the Center and relationships with the people who were in the building yesterday working to help people with disabilities and their families.

“We are shaken by the thought that some of the most vulnerable members of our community, people with profound developmental disabilities, might have been harmed along with dedicated professionals who work so hard on their behalf,” said Shelly DeButts, spokesperson for UCP’s national office. “Places like the Inland Regional Center are supposed to be safe havens for individuals and families who already have many challenges to face in their daily lives. It is supposed to be a place where they can seek and receive much-needed help.”

“We are all people in this struggle together to support people with developmental disabilities,” said Greg Wetmore, President and CEO of UCPIE. “We are resilient because we are together and we are stronger and more powerful than any evil that produced this act of terror.”

We extend our sympathy to the victims and their families, but also to the tight-knit community of disability service providers and their clients who are now traumatized. You can find out more about the amazing work UCP of the Inland Empire does at http://www.ucpie.org/.

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  

“Halloween Without Limits” Proves To Be A Real Treat!

During the month of October we asked to see the most creative and fun costumes for children with disabilities, and did you deliver! More than 60 photos featuring costume creations from all over were posted to our Facebook page. Nearly 10 MILLION of you saw photos from the contest on Facebook! With nearly 400,000 votes cast, the winner of Halloween Without Limits “let go” of the completion with over 120,000 votes! Congratulations to our winner, “Olaf and his Snow Cloud” from the movie “Frozen!”

Sandy Hundsrucker Olaf

 

The UCP Staff pick for the “Most Creative Costume” goes to the “Penalty Box!” We collectively thought this costume was so unique and had so many cool touches.

Kimberly Domonkos_HalloweenWithoutLimits

 

We had so many amazing entries that we had to show them off! Some of our honorable mentions go to…

The “Despicable Me” crew:

Wayne Cordova

This adorable “Care Bear”:

Kelly Cunningham_HalloweenWithoutLimits

This awsomely-constructed “Alice and Wonderland”:

Katherine Talbott Alice in Wonderland

Take a look in our photo album for all of the amazing entries!

The Latest Legislative Update from UCP

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

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

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

Home Care Rule

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

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

Reimbursement for Complex Rehab Technologies

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

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

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

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

UPDATE: Supreme Court Decides Home Care Rule Can Move Ahead

Over the past months we’ve been updating you on status of implementation of the Home Care Rule.  The most recent activity was in August when the appeals court determined that the Department of Labor could move forward with the long-delayed rule that would extend minimum wage and overtime protections to homecare workers.

Earlier this week the Supreme Court announced that it will not block the implementation of the Department of Labor’s rule.  The new rules do not apply to home-care workers who are hired directly by patients or their families, but only to those who are employed through businesses, including nonprofit organizations such as United Cerebral Palsy.

Several home care providers had sued to block the rule, which provides protections to workers who provide in-home care for the elderly, people with disabilities and others, arguing that it would negatively impact millions of older Americans and people with disabilities.

Many United Cerebral Palsy affiliates provide such vital services for people with disabilities. When the rule was issued, UCP made a statement warning of serious potential consequences people with disabilities and their families faced and urged Medicaid agencies to set reimbursement rates that would enable caregivers to continue to provide the critical support people with disabilities need to live at home.

“We want to see those caregivers fairly compensated for their work, but we don’t want that to come at the cost of someone else’s independence. We have come so far in helping individuals remain in their homes,” said Stephen Bennett, President and CEO of UCP.

A few things to note.The Department of Labor has announced a delay in the enforcement of the new rules, which was supposed to begin in January of 2015. While they Supreme Court has ruled they may still choose to take up the case sometime in the future; this most recent decision declines stopping the Labor Department from implementing the rule in the meantime.  We are working with other organizations to determine options and alternatives for how to proceed.  We know how important this is to you and will continue to provide updates as information becomes available.

 

The Pope, A New Speaker and a Budget: What’s Going on in Washington Right Now

It has been an exciting few weeks here in Washington, D.C.  It started with the city in celebration mode to host the pope and ended with the Speaker of the House resigning and the House and Senate passing a short-term continuing resolution (CR) that avoided a government shutdown.iStock_000012685951XSmall

While the CR is only short-term it was necessary as Congress has yet to pass any of the 12 annual appropriations bills and send them to the president’s desk.  As is the CR will continue to fund the government at fiscal year 2015 levels through December 11, 2015.

The current CR means that funding for programs and agencies important to the disability community, including the National Institutes of Health, Centers for Medicare and Medicaid and Centers for Disease Control and Prevention remain intact.

However, the looming December deadline still presents many reasons for us to remain watchful.  In addition to carving out a larger and longer-term budget agreement that must address across the board cuts and extend past the 2016 elections, Congress must also address hitting the federal debt ceiling.   

As for the new speaker of the house, it is likely to be Majority Leader Kevin McCarthy (R-CA).  However, many members are running for the other key positions in the leadership.  What is clear is that no matter who is nominated, they will surely have a full plate to deal with.

Here at UCP, we will continue to monitor the discussions and update you as the process proceeds.

 

Successful Steptember Challenge Raises $3.5 Million

Another September has come and gone and 2,236 people on 721 teams across the U.S. stepped up! Those of you who took the Steptember challenge joined ranks with a global community of people dedicated to taking 10,000 steps a day to help raise money and awareness for people with disabilities and their families.

That’s right – 10,000 steps a day! Every day for 28 days!

We made it!

Globally, we raised more than $3.5 million to help United Cerebral Palsy and its affiliates continue to provide vital services and supports for people like Matthew.

Matthew and his family

Matthew and his family

Three different teams stepped up for Matthew, raising nearly $3,000. Matthew attended United Cerebral Palsy’s Early Intervention Program when he was young and for the past few years he has attended the SPIRIT Saturday Recreation Program. Those programs might not exist without people like you who support UCP.

“We are so grateful to everyone who has donated to United Cerebral Palsy in Matthew’s name and are taking those steps and saving up their pocket change or writing out those checks,” said his mother, Maryann.

On behalf of Maryann, Matthew, the Steptember team and UCP’s affiliates, we thank you!

P.S. There’s still time to get your donations in. We’re not counting steps, but you can still contribute to your favorite team or to UCP’s national office until November 1 at www.steptember.us.

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Steptember Logo Medium (5in)

UCP’s “Halloween Without Limits” launches October 1!

United Cerebral Palsy is inviting Halloween revelers of all ages to enter our #Halloween Without Limits digital photo contest this October. No one should have to miss the fun of dressing up for Halloween because they have a disability which may not be accommodated by traditional costumes. Taking into account assistive technology such as wheelchairs and walkers or the sensory needs of children with Autism and Down syndrome can sometimes be a frustrating task. So, UCP is encouraging creativity by rewarding costumes designed to work specifically for the unique challenges faced by people with disabilities.

Stephen the PIrate

 

Beginning on October 1, we invite parents and individuals with disabilities to share their most creative, kooky and fun costumes to our Facebook page by tagging @UCPNational and using the hashtag #HalloweenWithoutLimits. It doesn’t matter if you’re a princess or a hero, a ghost or a ghoul, as long as you have gone the extra mile to accommodate a disability.

Winners will be chosen based on the number of combined “likes”, shares and comments. There will also be a “Most Creative Costume” chosen. Photos of children under the age of 18 must be submitted by a parent or guardian.

 

#HalloweenWithoutLimits How To: 

1. “Like” UCP on Facebook.

2. Upload your photo(s) to our Facebook wall, using the hashtag #HalloweenWithoutLimits (entries without the hashtag won’t be counted!)

3. Vote for your favorite photo(s) by “liking”, commenting or sharing throughout the month of October! Be sure to share to get votes from family and friends!

4. Wait for the winners to be announced on October 31 to see if you will get bragging rights for next year!

We can’t wait to see your costume creations!