Join with UCP and Help Save Our Services!

NEED YOUR HELP TODAY! MAKE YOUR VOICE HEARD! 

Join UCP and others in the disability community TODAY (April 21) to tell Members of Congress how important it is they take action on the Department of Labor iStock_000012685951XSmallOvertime Exemption Rule and protect providers and those who depend on their services. The rule is in the process of being finalized and we need Congress to ensure that funding and protections are in place that allow providers to continue to provide quality care so individuals with disabilities and their families can live independent lives.

Call your Member! 

Once you reach the office, ask for the front desk staff to transfer you to their colleague who handles labor or health care issues. Remember – Members of Congress need to hear stories from home to understand why they need to take action!

We have provided talking points to guide your call! 

THANK YOU!

SHARE THIS WITH EVERYONE YOU KNOW! 

UCP’s 2016 Annual Conference in Las Vegas!

United Cerebral Palsy held its Annual Conference on April 4-6, 2016 at the Vdara Hotel and Spa in Las Vegas. This year’s theme for the conference was “Going All In.” UCP affiliates from across the country gathered to take part in this year’s conference with a special focus on the future of UCP.

IMG_4459

Rupal Patel, PhD., founder of VocalID giving the keynote address at UCP’s Annual Conference on April 5, 2016 in Las Vegas.

The first full day of the conference began with the opening plenary on innovation and technology. Featured speakers included: Bruce Borenstein, CEO of AfterShockz, a company that creates headphones which use vibrations to communicate sound, unlike typical over-the-ear or in-ear headphones. Mr. Borenstein gave one of three keynote addresses, which centered on using technology to create accessibility to better the lives of people with disabilities and their families. 

IMG_4427

David Carucci, Executive Director of UCP of San Diego was the recipient of the Kathy O. Maul Leadership Award, pictured with Anita Porco, Vice President of Affiliate Network and Stephen Bennett, President/CEO of UCP National at the evening reception held on April 4, 2016.

IMG_4454

Bruce Borenstein, President and CEO of AfterShockz giving the opening keynote address at on April 5, 2016 at UCP’s Annual Conference in Las Vegas.

IMG_4429

Rick Forkosh, CEO of UCP Heartland being honored at the evening reception at UCP’s Annual Conference on April 4, 2016 in Las Vegas.

IMG_4440

Jeff Snyder, CEO of UCP of Central California being honored at the evening reception on April 4, 2016.

IMG_4465

Dr. Homayoon Kazerooni presenting on SuitX at the Opening Session at UCP’s Annual Conference held on April 5, 2016 .

Dr. Rupal Patel, another keynote speaker, gave the audience a glimpse of the amazing work that is being done at her company, VocalID.  Finally, Dr. Homayoon Kazerooni of SuitX spoke about the advancements on gait training for those living with CP, and the work of SuitX to try and create customized, user-friendly experiences for all. During the evening, a reception was held where we recognized our retiring Executive
Directors and CEOs. Jeff Snyder, CEO of UCP of Central California, was honored along with Linda Johns, Executive Director of UCP of East Central Alabama; Rick Forkosh, CEO of UCP of Hartland; Carol Hahn, Executive Director of UCP of Nebraska; and Les Leech, CEO of UCP of Southwest Florida. A special congratulations goes to Dave Carucci, Executive Director of UCP of San Diego on receiving the Kathy O. Maul Leadership Award, which honors one outstanding executive director each year.

A “Town Hall” style meeting was held on Tuesday April 5, 2016. This was an opportunity for our affiliates to come together and voice their thoughts and opinions, as well as to discuss the future of UCP.  We celebrated our Awards for Excellence winners at a special luncheon. The Awards for Excellence Luncheon recognizes the hard work and time of the wonderful volunteers who donate their time to our affiliates across the country.

The Nina Eaton Program of the Year Award was awarded to UCP of Oregon and Southwest Washington for their Employment Solutions Program. The Ethel Hausman Award went to Maren Jacobs of UCP of Berkshire County. The Ethel Hausman Award honors a local UCP volunteer who has made an outstanding contribution to UCP and to the quality of life of people with disabilities through their work.The Outstanding Youth Award was presented to Rachel Prior for the volunteer work with UCP of Greater Cleveland. The “Life Without Limits” Award was presented to Phillip Evans.

IMG_4487

Rachel Prior accepting The Outstanding Youth Award for her work with UCP of Cleveland.

After the Awards for Excellence Luncheon, affiliates were invited to take part in facilitated small group discussions. These discussions also served as an opportunity to give thoughts and opinions on the future of UCP and the affiliate network.

IMG_4517

Phillip Evans receiving the “Life Without Limits” Award at UCP’s Awards for Excellence Luncheon on April 5, 2016.

Breakout sessions were held on the last day of the conference. The topics for the breakout sessions included: The Future of Early Childhood Intervention with Dr. Jim Blackman, Medical Consultant for UCP; “Making It Work,” featuring The Employment Workgroup, which discussed employment for people with disabilities; and “ABC’s of Caregiving” presented by UCP’s Director of Advocacy, Jennifer McCue. “ABC’s of Caregiving” focused on the recent ruling from the Department of Labor on overtime for caregivers.  Stephen Bennett, CEO of UCP National, presented on the “The State of Disability Today.” This was a special session held for our sponsors and exhibitors to learn more about the current disability community and as a business how they can best serve them.  Finally, there was a special STEPtember 2016 breakfast, where attendees learned about the changes to STEPtember for this year and how to make it as lucrative and beneficial as possible for participating affiliates.

The winners for our
“Exhibitor Bingo” were also announced at the end of the conference.
Congratulations to the winners: Chris Adams of Stepping Stones, Inc. in Cincinnati; Mike Ward of UCP of Metro Detroit; Lynn Carpentier of Gillette Children’s Specialty Hospital/UCP of Minnesota; Monica Elsbrock of UCP of Nevada; Donna Fouts of UCP of Hawaii and Dr. Dave Piltz of UCP of West Central Wisconsin. A special thank you to Convaid, Troy Technologies, and AfterShockz for their generous donations for our “Exhibitor Bingo.” The prizes totaled over $6,000 and will given directly to clients in each affiliate’s territory.
Thank you to all who helped to make this year’s Annual Conference such a success!

 

 

THANK YOU TO OUR SPONSORS:

sponsor logos 1

sponsor logos 2v

Senate Passes National Family Caregiver Support Program

Earlier this week, the Senate passed the Older Americans Act (OAA). This bill contains the eligibility fix for the national family caregiver support program that will now include older relative caregivers (aged 55 and over) of their adult children with disabilities (aged 18-59).

The National Family Caregiver Support Program was the first federal program to recognize the needs of the nation’s family caregivers who provide the vast majority of long-term services and supports. This program not only funds respite, but individual counseling, support groups, and caregiver training for family caregivers, primarily for those who are caring for the aging population.iStock_000013039002Small

With the increasing number of Americans who are caregivers of their adult children with disabilities, we are thrilled to see this improvement in the program. There are over 800,000 caregivers of persons with intellectual and developmental disabilities (ID/DD) who are over the age of 60. This number is projected to grow substantially with the aging of the “baby boomer” generation. People with intellectual and developmental disabilities are also living longer due to medical advances. As parents of these individuals age, they will require more support to be able to continue providing care to their adult children and avoiding costly and unwanted institutional placement.

More than at any other time, when Medicaid, Medicare, and Social Security are being threatened, helping family caregivers to continue providing long-term services and supports is good public policy.

The National Family Caregiver Support Program and the Older Americans Act have been on our radar as they have direct impact for improving and securing a life with out limits for those living with disabilities and their families.

Call Your Member of Congress and tell them how thankful you are for the passage of the National Family Caregiver Support Program and the Older Americans Act!

To help guide your call, we have put together a list of talking points.

 

 

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!”

20151201_190400

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.