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

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

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

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

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

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

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

Thoughts on the Future of Healthcare

This blog was written from the personal experience of UCP’s Winter Intern surrounding the future of healthcare. This post is intended to express their personal thoughts and experiences. 

On February 7, 2017, I had the opportunity to attend my first press conference as United Cerebral Palsy (UCP)’s programs and development intern. The conference was held by the Committee on Education & The Workforce at the U.S. Capitol. The speakers included several Members of Congress, as well as school nurses and parent advocates. The experience was unforgettable, marking the first time I actually got to witness what goes on behind the scenes of health policy.

As an aspiring primary care physician, health care policy has always meant more to me than simple legislation. When policy changes are made, it directly impacts how doctors can perform their care and how patients can access it. I think it is extremely important that people understand and take charge of their own health, and this is made possible through expansions in health education and health access. Being at the Capitol, and feeling immersed in the actual political process with regards to health, showed me how important it is to continue advocating for these goals– and for my future patients.

One of the stories that particularly touched me at the event was that of parent advocate Anna Crone. She spoke to the room about her daughter who was born with type 1 diabetes. Part of her treatment requires receiving daily insulin injections, and having her finger pricked up to 10 times a day to check her blood glucose levels. In 2012, before the ACA was fully implemented, Crone’s husband had lost his job and was attempting to shop for private insurance. However, he was unable to find anything due to the fact that most insurance companies denied coverage at any cost for those living with pre-existing conditions. He was eventually able to find a job and get back on private insurance, however the family said they felt a significant ease of mind knowing that their daughter would never fully lose coverage thanks to the ACA.

From this story, along with others, I began to truly understand the degree to which the ACA has impacted millions of Americans. As in the case of Anna’s husband, life may get in the way when one least expects it, and it is important to know that you or those you love will still be protected. I am so grateful to have had the opportunity to better understand the complexities of our government; and, I know that this will serve to make me a better health advocate for not only individuals with disabilities, but for all.

Endrew F. v. Douglas County School District: Students With Disabilities and “Meaningful” Education

January 11, 2016 marked a momentous day for individuals with disabilities throughout the United States with the Supreme Court hearing arguments for Endrew v. Douglas County School District. The debate revolves around the interpretation of the 1982 Board of Education of the Hendrick Hudson Central School District v. Rowley case, relating to the Individuals with Disabilities Education Act of 1975 (IDEA).

A family in Colorado and their son Endrew argue that IDEA was intended to provide children with disabilities the access to a meaningful education which also allows for “significant educational progress.” The school district, however, interprets that IDEA has no set standard, and simply ensures that the child receives personalized education which is sufficient (i.e. “merely more than de minimus”). Endrew’s family is concerned that the Douglas County school district did not offer adequate resources for children with disabilities to achieve. After Endrew completed the fourth grade in the Douglas County School District accompanied by his Individualized Educational Plan (IEP), his parents disagreed with the proposed IEP for his fifth year and made the decision to put him in a private school. Endrew and his parents argued that he was not being sufficiently provided a Free and Appropriate Education (FAPE), as mandated by the IDEA, and were seeking reimbursement for the tuition of his private school.

Although Endrew and his family lost this case, over the course of administrative hearings and lower court cases, the family and the school district have been arguing over the measure of “some academic progress” and whether the district must meet a “merely more than de minimus” requirement. The federal government supports Endrew and his parents, drawing on Rowley which indicated that a FAPE must provide meaningful access to education which is much higher than “merely more than de minimus.”

Through the course of the Supreme Court’s oral arguments, Chief Justice John G. Roberts Jr. summarized that the main issue at hand is whether or not IDEA places emphasis on the word “some” or the word “benefit” in the phrase “some benefit”, each resulting in both contrasting and notable meanings that has manifested into the current argument: Providing some benefit would achieve the goals of the school district in distributing education that is merely better than nothing; whereas providing some benefit implies that the education be meaningful and allow for academic progress, which Endrew and his parents seek. Justice Elena Kagan also reminded the school district’s attorney of the precedents set in previous cases in which “some benefit” was repeatedly intended to have “some bite.”

The outcome of the Court’s decision will define the quality of education for students with disabilities for years to come. Those interested in following the case, can find a copy of the transcript from this week’s arguments here. United Cerebral Palsy, along with other organizations, has signed to an amicus brief which can be viewed here. We will continue to monitor this case, and will be interested to see how the Court decides.

UCP Remembers Jack Schillinger

Gloria_Jack

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

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

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

UCP and the National Council on Disability – “First Responders and Disability”

On December 9, 2016, UCP and the National Council on Disability joined together to host a day of conversation surrounding first responders and the disability community. Bringing together diverse perspectives from across the country, the day was a raw and honest look at the way law enforcement and other members of the first responder community interact with those living with disabilities.

Watch the footage (captioned) below:

 

View the Program Agenda

 

The RISE Act of 2016

RISE Act – The Respond, Innovate, Support, and Empower Act of 2016 (Bill S.2203)

Students living with a broad range of disabilities are enrolling at 4-year institutions more than ever before, but not all are completing their education. According to the National Center for Learning Disabilities, students with learning disabilities (LD) enrolled at 4-year colleges or universities are completing their degrees at a rate of only 45%. For their non-disabled peers, the rate of completion for a 4-year degree currently stands at 53%. There are multiple factors that could be contributing to this rate. A new bill, The Respond, Innovate, Support, and Empower Act – or RISE Act, was introduced in the Senate on December 7, 2016 by Senators Bob Casey (D-PA), Orrin Hatch (R-UT), and Bill Cassidy (R-LA). This bill seeks to remove some of the most common barriers faced by students, and their families s, by requiring 4-year colleges and universities to adopt more transparent policies for their disability services – making it easier for students to obtain accommodations, services, and the supports they need throughout their college experience.

The RISE Act would amend the Higher Education Act (HEA) to clarify the types of documentation institutions of higher education must accept from students who are enrolling who have a disability. This would allow students to submit the same form(s)of documentation for proof of disability as they have done throughout their K-12 education. As stated in the Americans with Disabilities Act of 1990 and the Rehabilitation Act of 1973, sufficient documentation for showing a student’s disability includes:

  • Previous documentation of an Individualized Education Plan (IEP), including plans that may be both current and out-of-date;
  • Documentation of a 504 Education Plan;
  • Private school documentation of services;
  • A plan or record of disability from another institution of higher learning

In addition, the RISE Act would authorize $10 million in funds from the National Center for Information and Technical Support for Postsecondary Students with Disabilities (an already existing program under the HEOA). The funds would go towards helping to better equip professors, teachers, and other facility and staff at colleges and universities to meet the growing needs of students with disabilities, including providing training, strategies, and help with providing accommodations. The RISE Act would also require all institutions of higher learning to adopt transparent policies regarding their disability services, and require them to widely share and disseminate that information to parents and families.

United Cerebral Palsy and the National Council on Disability Coming Together for “First Responders and Disability”

UCP-NCD2United Cerebral Palsy (UCP) and the National Council on Disability (NCD) are coming together to host a day long convening on December 9th, 2016, focusing on First Responders and the Disability Community. The discussion will center on first responder reform and the impact on the disability community.

The purpose of this discussion is to gather information and resources to inform NCD’s 2017 policy project focusing on how to transform the policies and practice around First Responders engagement with the disability community. This conversation will include experts in criminal justice reform, disability rights advocates, policymakers, law enforcement organizations, and individuals impacted by state violence directly.

Please join us from 9:30 am to 2:30 pm EST in person or tune in to the live stream.

For more information, including how to RSVP: Please click here.

See the program agenda here.

Read Speaker Bios here.

We’re Partnering With The Mighty!

We’re thrilled to announce a new partnership that will bring United Cerebral Palsy’s resources to the front of The Mighty‘s wide-reaching readership. We will now  have a growing home page on The Mighty , and appear on many stories on the site, allowing us to get many more people involved with our organization.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness, and disability. It is estimated that 764,000 children and adults in the U.S. manifest one or more of the symptoms of cerebral palsy, and that 1 in 5 Americans live with some form of disability. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We’re dedicated to providing comprehensive support and community for children and adults living with cerebral palsy, as well as other disabilities, and their families. With this partnership, we’ll be able to help even more people.

We encourage you to submit a story to The Mighty and make your voice heard.

Here’s an example of the kind of stories you’ll find on The Mighty: Tommy Hilfiger Launches Adaptive Collection for Children With Disabilities

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 how 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

 

 

Print

FOR IMMEDIATE RELEASE

For Inquiries: Kaitlyn Meuser, kmeuser@ucp.org, 202-973-7185

UNITED CEREBRAL PALSY RELEASES STATE RANKINGS ON SERVICES FOR AMERICANS WITH DISABILITIES

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 cfi.ucp.org.

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 www.ucp.org.

###

 

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