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.