Share Your Photos for UCP’s “Halloween Without Limits”!

It’s that time of year again! It’s time for UCP’s “Halloween Without Limits”. From now until October 31st, share your most creative costume photos and show us you celebrate a “Halloween Without Limits”! We want to see your style and how you make Halloween your own!

UCP’s “Halloween Without Limits” is open to all ages, children and adults alike, who get into the Halloween spirit. We invite parents and individuals with disabilities to share their most creative, kooky and fun costumes to our Facebook page by tagging @UnitedCerebralPalsy 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.

Photos of children under the age of 18 MUST be submitted by a parent or guardian.

The rules are simple:

All you have to do is post your photos to UCP’s Facebook page using #HalloweenWithoutLimits or #HWL so we can all see them!

Check out photos from last year! 

We can’t wait to see your photos!

HalloweenWL 2016

UCP Releases 2016 Case for Inclusion Report





For Inquiries: Kaitlyn Meuser,, 202-973-7185


Arizona, Vermont, New Hampshire, Michigan & Hawaii Top 2016 List

Washington, D.C. (September 20, 2016) – United Cerebral Palsy (UCP) released the 2016 Case for Inclusion today, an annual report and interactive website used to track state-by-state community living standards for Americans living with intellectual and developmental disabilities (ID/DD).

The Case for Inclusion examines data and outcomes for all 50 states and the District of Columbia (DC), ranking each on a set of key indicators, including how people with disabilities live and participate in their communities, if they are satisfied with their lives, and how easily the services and supports they need are accessed. By taking these factors into account, UCP is able to publish this comprehensive analysis of each state’s progress or failures in providing critical services to individuals living with disabilities.

In addition to rankings, the report digs deeper into two critical issues facing people with disabilities and their families: waiting lists for services as well as support for the transition from high school into an adult life in the community. Two case studies examine how states are approaching those issues.

Since 2006, the rankings have enabled families, advocates, the media and policymakers to measure each state’s progress — or lack of improvement — and gain insight into how the highest-ranking states are achieving their success. To enhance the usability of the report, UCP publishes tables of the data from which the report was compiled on an interactive website where visitors can compare and contrast results among selected states.

“Ultimately, the goal of this research is to promote inclusion and enhance the quality of life for all Americans,” said Richard Forkosh, Interim President/CEO of United Cerebral Palsy. “UCP is committed to shining a light on how well states are actually serving people with disabilities and, by extension, their families and communities. Also, we want to underscore the national context for this data so that stakeholders can use this information to drive progress.”

“For more than a decade, UCP has ranked states to showcase the good and to highlight what needs improvement. The fact is real progress is being made. More Americans with ID/DD are living in the community rather than being isolated in large state institutions. But much more work needs to be done to reduce waiting lists, increase employment and expand support to families. This annual ranking clearly shows the true picture of what’s happening and what should be happening in the states for our friends and neighbors with ID/DD,” stated Tarren Bragdon, the report’s author since 2006.

To download and read the entire Case for Inclusion report, or explore the data tables, visit

Significant Takeaways from the 2016 Rankings

Promoting Independence

1. All states still have room for improvement, but some states have consistently remained at the bottom since 2007, including Arkansas (#49), Illinois (#47), Mississippi (#51) and Texas (#50) primarily due to the small portion of people and resources dedicated to those in small or home-like settings in these four states.

2. 32 states, same as last year, meet the 80/80 Home and Community Standard, which means that at least 80 percent of all individuals with ID/DD are served in the community and 80 percent of all resources spent on those with ID/DD are for home (less than 7 residents per setting) and community support. Those that do not meet the 80/80 standard are: Arkansas, Delaware, Florida, Illinois, Indiana, Iowa, Kentucky, Louisiana, Mississippi, New Jersey, North Carolina, North Dakota, Ohio, Oklahoma, South Carolina, South Dakota, Texas, Utah and Virginia. Connecticut is very close (with 79% spent on HCBS).

3. As of 2014, 15 states report having no state institutions to seclude those with ID/DD, including: Alabama, Alaska, Colorado, Hawaii, Indiana, Maine, Michigan, Minnesota, New Hampshire, New Mexico, Oregon, Rhode Island, Vermont, West Virginia and Washington, D.C. Another 9 States have only one institution each (Arizona, Delaware, Idaho, Montana, Nevada, North Dakota, South Dakota, Utah and Wyoming). Since 1960, 205 of 354 state institutions have been closed, according to the University of Minnesota’s Research and Training Center on Community Living.

4. 27 states, up from 26, now report meeting the 80 percent Home-Like Setting standard, which means that at least 80 percent of all individuals with ID/DD are served in settings such as their own home, a family home, family foster care or small group settings like shared apartments with fewer than four residents. The U.S. average for this standard is 80 percent. Just eleven (up from 8) States meet a top-performing 90 percent Home-like Setting standard: Alaska, Arizona, California, Colorado, D.C., Michigan, Nevada, New Hampshire, Vermont, Washington, and Wisconsin.

5. Fifteen states, up from ten last year, report at least 10 percent of individuals using self-directed services, according to the National Core Indicators survey in 36 states. Five states report at least 20 percent being self-directed. These states include: Florida, Illinois, New Hampshire, Utah and Vermont.

Tracking Health, Safety and Quality of Life

6. 47 states, up from 42 last year, participate in the National Core Indicators (NCI) survey, a comprehensive quality-assurance program that includes standard measurements to assess outcomes of services. A total of 36 states, up from 29 last year, reported data outcomes in 2015.

Keeping Families Together

7. Only 15 states, up from 14 last year, report that they are supporting a large share of families through family support (at least 200 families per 100,000 of population). These support services provide assistance to families that are caring for children with disabilities at home, which helps keep families together, and people with disabilities living in a community setting. These family-focused state programs were in: Arizona, California, Delaware, Louisiana, Minnesota, Montana, New Hampshire, New Mexico, New York, Pennsylvania, South Carolina, South Dakota, Vermont, Wisconsin, and Wyoming.

Promoting Productivity

8. 10 states, up from 8 last year, report having at least 33 percent of individuals with ID/DD working in competitive employment. These states include: Connecticut, Maryland, New Hampshire, New Mexico, Oklahoma, Oregon, Rhode Island, Vermont, Washington, and West Virginia.

9. 15 states report successfully placing at least 60 percent of individuals in vocational rehabilitation in jobs, with nineteen states reporting the average number of hours worked for those individuals placed being at least 25 hours and four states reporting at least half of those served getting a job within one year. No states met the standard on all three success measures.

Serving Those in Need

10. Waiting lists for residential and community services are high and show the unmet need. Almost 350,000 people, 28,000 more than last year, are on a waiting list for Home and Community-Based Services. This requires a daunting 46 percent increase in States’ HCBS programs. 18 states, an increase from 16 last year, report no waiting list or a small waiting list (requiring less than 10 percent program growth).

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



To view this press release in PDF format: click here.

UCP to Host Mandela Washington Fellow




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Contact:                                                                                  FOR IMMEDIATE RELEASE

Ellie Collinson                                                                                     August 8, 2016


UCP welcomes Tobiloba Ajayi as a part of the Mandela Washington Fellowship for Young African Leaders Initiative.

Washington, DC (August 8, 2016) – United Cerebral Palsy is pleased to announce that they have been chosen as a host for the 2016 Mandela Washington Fellowship for Young African Leaders Initiative. Tobiloba Ajayi, a Nigerian attorney and cerebral palsy advocate, will be joining the UCP staff for six weeks in order to polish her leadership skills and foster professional growth as part of her Professional Development Experience.


The Mandela Washington Fellowship, a key piece of President Obama’s Young African Leaders Initiative (YALI), equips young African leaders with the opportunity to engage in leadership training, professional opportunities, networking, and community support. Fellows are selected based on their extensive record of accomplishment in promoting and innovating positive change throughout their community in one of the 49 countries in Sub-Saharan Africa. After the Fellows attend a six-week Academic and Leadership Institute and meet with President Obama in Washington, DC, they will join private businesses, NGOs, and government agencies across the United States for an additional six week practicum. Here, the 100 Fellows in the program are granted a unique opportunity to develop a mentorship that will continue to assist them even as they resume their leadership development back home.


At United Cerebral Palsy, Ajayi will be working closely with UCP’s Program Department on the creation of international resource and emergency preparedness guides for people with disabilities.


To learn more about UCP and the Mandela Washington Fellowship program, visit or



About United Cerebral Palsy

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a broad range of disabilities. Together with over 70 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit


About Mandela Washington Fellowship

The Mandela Washington Fellowship for Young African Leaders is a U.S. government program that is supported in its implementation by the International Research & Exchanges Board (IREX). For more information about the Mandela Washington Fellowship, visit and join the conversation with #YALI2016.

UCP Responds to Attack at the Tsukui Yamayuri-En facility in Japan

We are deeply saddened by the events that took place at the Tsukui Yamayuri-En facility in Sagamihara, Japan early Tuesday morning. Our hearts and thoughts are with the families and loved ones of the 19 victims as well as the 26 survivors who were injured in the attack. Violence of this magnitude is shocking, particularly when it appears that the attacker was targeting people with disabilities. We at UCP, and throughout our affiliate network, believe strongly in our mission, and that life for people with disabilities and their families should be one that is free of violence.

Summary of SSA Comments


Recently, United Cerebral Palsy submitted comments regarding the implementation of the National Instant Criminal Background Check System (NICS) and the potential impact on individuals with mental disabilities.  


The Notice of Proposed Rulemaking concerning “Implementation of the NICS Improvements Act of 2007” is a proposed rule with no solid foundation. It incorrectly assumes that there is a connection between an increased risk of engaging in gun violence and having a representative payee to manage one’s Social Security benefits due to an impairment found on a “mental impairment” listing.


Four main reasons to urge Social Security Administration (SSA) to withdraw the proposed rule and why United Cerebral Palsy opposes it:


First, the National Instant Criminal Background Check System (NICS) requires the reporting of an individual to the FBI NICS database if they “lack the capacity to contract or manage his own affairs” as a result of “marked subnormal intelligence, or mental illness, incompetency condition or disease.” Having a representative payee does not meet this standard.


Second, this would create an ineffective strategy to address gun violence. It assumes that those with mental impairments are potential perpetrators of gun violence. It would create a false sense that meaningful action has been taken to address gun violence.


Third, this would perpetuate the incorrect association of mental disabilities with gun violence. This could dissuade people with mental impairments from seeking appropriate treatment or services, or from applying for financial aid and medical assistance programs.


Fourth, it would create new burdens on the SSA without providing new resources. This proposed rule would divert scarce resources away from the core focus of the SSA.  


See the formal comments here.




The Achieving a Better Life Experience Act of 2014 (ABLE)

This post was written by UCP intern Katie Tung in collaboration with UCP’s Director of Advocacy, Jennifer McCue. 

There has been a lot of activity around the Achieving a Better Life Experience Act (ABLE) of 2014. To help you understand the legislation and it’s impact we’ve created a quick summary sheet. As always, if you have additional questions please reach out and let us know.

What it is:

The Achieving a Better Life Experience Act of 2014 (ABLE) allows individuals and families with disabilities to save money in a separate tax-free account that does not negatively affect their eligibility to qualify for federal support programs, most specifically Medicaid and Social Security Benefits. These savings supplement the individual’s current benefit plans and do not disqualify their eligibility to receive federal benefits, unless the benefits are related to housing expenses or the individual has ABLE accounts exceeding $100,000. Medicaid services can be retained regardless of how much is in the accounts.

The purpose of ABLE accounts is to relieve the financial stress caused by the cost of disability-related services. In additional to federal benefits, the assets in ABLE accounts can be used to cover any expense related to the disability of the individual.  These expenses would include but are not limited to: education, transportation, housing, assistive technology, health services and prevention costs. If the individual were to die with assets still in the account, legislation requires the remaining funds to be paid to the state to reimburse for Medicaid benefits.

These accounts would be known as 529-ABLE accounts or 529A. Assets must be added in after-tax dollars but can be withdraw tax-free, similar to 529 college savings accounts. Donors can add up to $14,000 per year, with maximum total contributions totaling at $100,000.

Ohio and Tennessee are the first to have opened ABLE accounts to the public and Nebraska will be opening their program on June 30th. Florida will be enrolling their plan on July 1st. Since individual states are in charge of regulating their ABLE programs, enrollment fees and investment options may vary slightly.

Proposed Improvements:

The ABLE Age Adjustment Act was introduced in March 2016 to raise the eligibility age to create an ABLE account from 26 to 46 years old. The current legislation requires the individual to have developed their disability before the age of 26. By raising the onset age, ABLE could better accommodate individuals who acquire disabilities later in life, such as disabled veterans, spinal cord injuries, heart failure, or other later-developing disabilities.

The ABLE to Work Act would allow individuals with a disability who are employed to personally contribute to their ABLE account. In addition to the $14,000 that can be contributed by parents or guardians, the beneficiary would be able to contribute funds up to the federal poverty level, currently $11,770 per year. Individuals would still qualify for Savers Tax Credit, a tax credit for individuals of low-to-moderate income saving for retirement.

The ABLE Financial Planning Act moves to allow families to rollover savings from their child with a disability’s 529 college saving account to an ABLE account and vice versa. This would allow families to draw previous college savings and put it in their child’s ABLE account without suffering from any taxes. It would also allow families to later draw from ABLE accounts to put into their child’s college savings account.


Outline of ABLE Act –

Ohio’s ABLE program (STABLE) –

Tennessee’s ABLE program –

Definitions and qualifications for Savers Credit –

ABLE Age Adjustment bill –

ABLE Financial Planning bill –

ABLE to Work bill –

Meeting with Center for Budget and Policy Priorities

We know how important Medicaid policies are for you. Here in D.C. we are doing our part to continually insert ourselves into these discussions on behalf of individuals with disabilities, their families and those that provide care and services. Recently, UCP attended a talk with the Center for Budget and Policy Priorities (CBPP) regarding the threat posed to Medicaid in the current political environment.

Here is a summary of the meeting, along with key takeaways. The primary topic of discussion from CBPP that posed the biggest threat was the sectioning of Medicaid funding to states, primarily in the form of Per Capita Caps and Block Grants.  Amongst the various alterations in the budgetary sector of Medicaid, are Block Grants and Per Capita Cap, both of which section off the funding to states. While both have their varying adverse factors, the common ground lies in the fact that the implementation of such monetary action depletes the protection that the disability community receives through Medicaid.

We appreciate the varying level of background and impact of this issue for our network, but we wanted to provide this as a resource to use as you see fit.  If you have additional questions please reach out.

What is the difference between a Block Grant and a Per Capita Cap?

  • Block Grants are given to the state in one lump sum
    • States allocate where the money will go
    • States also have to make up the difference after federally allotted money is used
  • Per Capita Caps are fixed
    • Capped funds from the governments issued to states per beneficiary of Medicaid
    • There is an anticipated larger gap between funding and spending due to the increase of technological advancement

What is the problem at hand?

Block grants are one of the least accountable of measures to “reform” Medicaid.  It has an inability to adjust to varying economic conditions; it can be cut easily and it’s bias towards, or against, certain beneficiary groups puts it at a position of being severely harmful to the disability community.

Per Capita Caps have been a part of the Republican Task Force in regards to Medicaid Reform. Seen as the lesser of two evils, the attention surrounding this initiative has given it undue positive light in attempt to downplay the negative repercussions that the implementation of such will have on those with disabilities who benefit from Medicaid.

If implemented, Per Capita Caps will limit the budgetary liberty per beneficiary. Through its supposed flexible nature, the fluctuation of this cap will cause altercation amongst the beneficiary groups and the state governments. Seen as bipartisan, and a better alternative to Block Grants, Per Capita Caps inevitably moved conversation away from the stride that Medicaid innovation has made.

In terms of Republican Task Force strategy, many Democratic Governors and Senators have signed on for Per Capita Caps, seeing, again, that it may be considered to be the lesser of two evils. This supposed bipartisan act will decrease the amount of funding per state per beneficiary, therefore increasing the cost as time goes through due to a variety of external factors, i.e., disease, pharmaceutical drug innovation, accessible technology, as these costs will not be picked up by Per Capita Cap.

What does this mean for the disability community?

As mentioned, it is evident that the disability population under Medicaid will not be protected in the event that Per Capita Caps are implemented, due to the fact that there have been vast strides in the innovative technology surrounding assistance for those who have disabilities. As per the act, these costs will not be picked up by Per Capita Cap, meaning that any new innovation will be subject to budgetary restrictions and will only be available with additional cost.  

This is all concerning and individuals with disabilities may no longer be entitled to health care or to long term services and supports under a block grant.  Combined with a fixed amount of severely reduced funding, states could be forced to cut eligibility, benefits, and provider payments. People with disabilities stand to lose access to physicians, medications, therapies, medical equipment, and many other crucial products and services. Worse, states could go back to institutionalizing people with disabilities to save money since they would no longer have to meet the quality standards currently imposed by the Medicaid program for nursing homes or community based services.  

A per capita cap would make this problem [of the struggle that patients go through to get the necessary budgets to have accessible care] worse by limiting the federal role in Medicaid and shifting more of the program’s costs onto states, providers, and patients. Cuts to provider payments, elimination of benefits and reductions in access to care are virtually unavoidable under this type of proposal.

It seems that if Medicaid budget cuts do go underway, that many of the services that allow for individuals with disabilities to have liberties, will disintegrate, therefore forcing certain individuals to refer back to institutions to obtain services that were otherwise integrated within the community. In a way, this repercussion contradicts the Olmstead Act from 1999, which worked to remove economic influences from forcing individuals into institutions. By cutting Medicaid budget, and by proxy, its services, individuals that work in the community and live at home face the threat of losing a large portion of their own budget on medical care, forcing them out of their homes and back into institutions.

What can we do next?

We continue to watch and monitor the development of programs around Medicaid Block Grants and Per Capita Caps.  We need to look at both of these as threats to the current Medicaid system and not as one being a solution that is be is imperative that there should be a conversation shift in the way that the media portrays this endeavor. Instead of looking at Per Capita Cap as the lesser of two evils, it is important to take into account what this means specifically for the disability community and what this means for the future of technology and pharmaceutical advancements. State officials should be informed of the true bearing of cost that they will be burdened with, and they should be prepared to hear of the lack of protection that it will provide to beneficiaries.

Keeping everyone who is affected by the funding changes in Medicaid updated is imperative, seeing as it is one of the issues that will affect life on a day to day basis for individuals with disabilities. We wish to drive programs and legislations that will allow for a higher standard of health care. We not only wish to expand upon the knowledge that our affiliates hold on Medicaid and other health care issues, but also wish to understand how each individual is impacted by these issues and work towards significant policy change.

UCP Celebrates the 17th Anniversary of The Olmstead Decision


The Olmstead Act began in Georgia, where two women, Lois Curtis and Elaine Wilson, saw constant segregation due to their intellectual disabilities. Their frequent trips to state mental hospitals brought attention to the fact that community support and personal choice for individuals with disabilities was lackluster, almost nonexistent. After being represented by an attorney at the Atlanta Legal Aid Society, Lois, and later Elaine, saw her position for removal of institutional bias being taken up to the U.S. Supreme Court for consideration.

It was found under the Americans with Disabilities Act (1990), that discrimination against an individual with disabilities was illegal, and that the behavior portrayed towards both Curtis and Wilson held both legal and moral conflict.



Under the Olmstead Act, The Court stated that individuals with disabilities have rights that are inclusive of:

  • Prohibition in the segregation of individuals with disabilities in community living
  • The ability to receive services in integrated environments
    • Services received may be appropriate to individual needs
  • The ability to receive community based services rather than institutionally based ones, in the event that:
    • Community placement is the appropriate course of action
    • The individual in question does not oppose to the treatment being offered
    • The individual’s placement can be accommodated in a reasonable manner


As a section under the Americans with Disabilities Act, the Olmstead Act follows the anti-discriminatory nature that the ADA set many years ago. The Americans with Disabilities Act, which celebrates its 26th signing anniversary, prohibits discrimination against individuals with disabilities in a number of areas that include transportation, employment, government activities, and more. According to the Olmstead Act, unjustified segregation would violate Title II of the ADA, which stated that individuals with disabilities may not be discriminated against when it came to State and local government provided public services. This gave individuals with disabilities the right to chose where they were to live, instead of having economic factors coerce them into making decisions they may not otherwise wish to make. The Olmstead Act tied together the anti-discriminatory nature of the ADA by not legally binding individuals with disabilities to be institutionalized, meaning that there legally cannot be a system that will inevitable end up with a majority of the disability community in institutions.

For individuals with disabilities, these acts held the power to allow them to work in traditional office environments, live in community settings that foster independent lifestyles, receive equal opportunities when it came to a variety of traditionally implemented services, and most importantly, have the right to decide where to live, without economic or legal influences.

Here at UCP, we appreciate the previously implemented and ongoing efforts for integration, habilitation, and opportunity for expansion for those who live with disabilities. Many of our affiliates provide services that both directly and indirectly relate to the Olmstead decision. For example, most of our affiliates offer community living based services. Outlined below are a sampling of specific services that follow ideals set by the Olmstead Act.



  • Within the UCP of Central Pennsylvania lies In-Home and Community Support Programs, which offer a variety of training and support to individuals with disabilities in the realm of opportunities that allow them to participate further in the community around them. These community integration and in-home habilitation programs allow for an individual to feel as though they can be cared for and supported throughout processes in any environment that they choose. It need not have to be an institution that can provide habilitation, but rather, it can occur within the home, simultaneously alongside community support options.


  • Through UCP of Central Arizona, the Summer Program, as an extension of the Day Treatment and Training for Kids and Teens Program, works on even further enhancement and training of social, community, cognitive, and communication skills for kids and teens. This program focuses on the individual needs of each child, and exposes each individual to real life scenarios in preparation for community integration. This program, along with many other of it’s kind, provides services of transportation to and from the individual’s home/school, making it clear that such services, again, are not contingent upon whether or not an individual is residing at home or within an institution. Usually, habilitation skills are not necessarily provided for children outside of an institution setting, however, as can be seen from such programs, not only is the child free to reside wherever he/she may desire, but he/she may also be provided with many character building and habilitation services that otherwise would confine them to institutions.


In addition to skill specific programs, services such as Child Development, Respite Care, and Early Intervention are made available in a location of the individual’s choice, making it clear that community integration, and most of all, personal choice, is the priority when it comes to the creation and reformation of programs focused towards individuals with disabilities.

While disability rights and removal of bias and segregation from the disability community has seen great progress, there is much still much to be done.  On the 17th anniversary of the signing of the Olmstead Act, we at UCP wish to not only celebrate, but also take part in movements that further advocate for the rights that all individuals are entitled to.

We want to hear how the Olmstead decision has impacted your life! Share your stories using the hashtag #OlmsteadAction on social media.

Find out more information on the Administration for Community Living’s celebration of the Olmstead Anniversary here. 

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.


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. 


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.


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.


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


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


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.


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.


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!




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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.