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.

UCP Celebrates the 17th Anniversary of The Olmstead Decision

 

The outcome of the Olmstead v. L.C. case 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 of 1990 (ADA), 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.

 

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Under the Olmstead decision, 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 ADA, the Olmstead decision follows the anti-discriminatory nature that the ADA set many years ago. The ADA, 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 decision, 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 choose where they were to live, instead of having economic factors coerce them into making decisions they may not otherwise wish to make. The Olmstead decision 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 inevitably 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 decision.

 

 

  • 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 decision, 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. 

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!

Champions of Change Honored at White House

WHChaps 1This week, staff from UCP National, along with several participants in our summer intern program, attended the Champions of Change ceremony at the White House in Washington, D.C. The program, “Disability Advocacy Across Generations” recognized the 25th anniversary of the Americans with Disabilities Act and nine “Champions of Change” selected by the Obama administration. Each champion has been very influential in the disability community and has brought about major changes, while facing obstacles of their own.

Champion Dilshad Ali, a mother of a son with autism, spoke about how disability is something that is hidden and never spoken of in her Muslim community. Ali discussed the importance of being able to access the support of one’s religious or cultural institutions as part of a panel on Effective Disability Advocacy. There was also Dior Vargas, a Latina woman who suffers with depression and anxiety. Vargas emphasized how many times disabilities are ‘invisible’, and therefore go unnoticed. She brought an interesting aspect to the table, and channeled people’s focus on another kind of disability, mental illnesses, which are often left out of the conversation on disability advocacy.

The day’s speakers included Jim Abbott, a former MLB pitcher and Olympian born without a right hand. Abbott has faced physical obstacles his whole life – especially in sports. He spoke about how he had to do things a little bit differently, but that is what got him to where he is today. He showed the audience how he adapted to pitching a baseball with one hand, and told stories about how former teachers and coaches who were open to “doing things differently,” giving him the opportunity to excel.

Another panel on Owning the Future: Disability, Diversity and Leadership included some Champions, who faced more communication barriers than others. Mike Ellis, who is deaf, explained more about his role at AT &T and working to ensure communication technology was accessible to all. Another champion, Catherine Hutchinson, experienced a severe brain injury and is now quadriplegic used a speech synthesizer to communicate.

At the end of the second panel, Derrick Coleman from the SuperBowl champion Seattle Seahawks worked to motivate the crowd to follow their dreams. He lost his hearing at the age of 3 and is the first deaf player in the NFL. Coleman told the audience to be themselves and love themselves.

U.S Secretary of Labor Thomas Perez closed out the event with information about current initiatives to improve upon worker rights, such as raising the federal minimum wage for all workers and echoed some of the panelist’s comments about the importance of participation in the workforce to true inclusion and independence.

Comedians with Disabilities Come Together to Break Down Barriers

Twenty five years ago, before the passage of the landmark Americans with Disabilities Act (ADA), there likely would have been physical barriers in clubs and theaters, challenges at airports and in hotels or other issues that would make it difficult, difficult if not impossible, for Michael Aronin, Shanon DeVido, Tim Grill, and Mike Murray to mount a full-fledged comedy tour.

In 2015, accessibility in public places has improved and with it the attitudes of many toward people with disabilities such as spina bifida, cerebral palsy, hearing impairment and spinal muscular atrophy. However, for many who don’t have a close friend or family member with a disability, there are still misconceptions and a lack of understanding. Employers can still be reluctant to hire people with disabilities, especially in the entertainment industry where there is a perception that audiences won’t respond well.

So, the comedians set out on a mission to bridge the gap with laughter. Wicked wit forged from a lifetime of dealing with adversity, No Comic Left Behind smashes stereotypes with every joke: people with disabilities are really no different from you and I. Set-ups on relationships, jobs, and family come with punch lines about wheelchairs and the underrated benefits of being deaf.

“Comedy is a great way to break down that barrier that people often have when they’re talking with people with disabilities,” said Shannon DeVido.

The comedians have long understood that laughter is the best medicine. Michael Aronin, who nearly died at birth and now has cerebral palsy, uses humor to coach audiences toward their career goals as a motivational speaker. And, Tim Grill was born with spina bifida, going through thirteen surgeries to enable him to walk. Rounded out by experienced performer and wheelchair user Shannon DeVido and Mike Murray, who was deaf until the age of 40 when Cochlear implants brought him into the hearing world, each comic is eager to raise awareness about disability.

Collectively, performing under the banner of No Comic Left Behind, the quartet is determined to follow their mission across the country in clubs, theaters and universities. Their ultimate goal is to expose as broad of an audience as possible through, raising awareness about the inherent abilities of people with disabilities. Once the audience is laughing, it becomes much easier to talk about the serious stuff and make people think about what they can do to better include people with disabilities in everyday life.

“Think about it,” said Tim Grill. “We can win over 100 or more people with each show just by being funny – which is something we do on daily basis anyway. Then those 100 people go back out into the world feeling a lot less uncomfortable around people with disabilities and help spread the love. They’ll be more likely to think about accessibility and inclusion and more likely to have some understanding of the next person with a disability that they meet.”

 

For more information about No Comic Left Behind, check out their website!

You can also watch a short video featuring the comics of No Comic Left Behind on UCP’s Youtube Channel!

Keeping the Promise: Self Advocates Defining the Meaning of Community Living

Leaders from the Autistic Self Advocacy Network, the National Youth Leadership Network, Self-Advocates Becoming Empowered, and other allies came together for a Community Living Summit to provide the Centers for Medicare and Medicaid Services (CMS) with a definition of community that captures the most vital elements of community life for people with disabilities. The summit proceedings and interviews addressed three specific questions:

  • What are three things that determine that a place or residential program is not part of the community?
     
  • What are three things that determine that a place or program where a person gets residential services is truly in the community?
     
  • What does Community Living really mean?

The results of these conversations were published in the document, Keeping the Promise: Self Advocates Defining the Meaning of Community Living