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.

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.

 

 

Legislative Update: January 2016

As we roll into the New Year, we wanted to update you quickly on a few policy issues that wrapped up in the end of the year and will be on our radar throughout 2016: 

 

Caregiving and Respite Care

The issue of caregiving, and providing resources and supports to those who receive and those who provide care is an issue we will continue to invest and pay attention to through iStock_000012685951XSmall2016. To end the year, Congress showed support for Respite Care and Caregiving by passing the Lifespan Respite Care Act  and providing increased funding for the National Caregiver Support Program. Included in the end of the year bill passed to fund the Federal Government was a provision that increased funding for the National Caregiver Support Program by $5 million and Lifespan Respite received an additional $1 million! This is real movement for supporting family caregivers.  In the next months we’ll update you on what’s next for caregiving policy and programs and what you can do to help ensure these programs continue to grow. 

 

Education

In December, Congress passed and the President signed Every Student Succeeds Act (ESSA), which goes farther to assist students with disabilities, then No Child Left Behind did.  The new bill incorporates data and new knowledge about how to most effectively teach students with disabilities so they can successfully graduate and become post high school career/college ready. It also ensures accommodations for assessments for students with disabilities; requires local education agencies to provide evidence-based interventions in schools with consistently underperforming subgroups (including students with disabilities), requires states to address how they improve conditions for learning including reducing incidents of bullying and harassment and overuse of discipline practices and reduce the use of aversive behavioral interventions (such as restraints and seclusion). Moreover, this new legislation significantly shifts authority to make very important education decision to the states and school districts. Throughout 2015, UCP participated in meetings, signed letters of support and worked with stakeholders to ensure the bill would strengthen provisions to ensure that all students have the opportunity to receive a quality education.  This bill is one we do support.  Now, over the course of 2016, we will be updating and reaching out to you to ensure that state level practices being put forward reflect what is best for those living with and impacted disabilities.  

 

Complex Rehabilitation Technology

Coverage and reimbursement for Complex Rehabilitation Technologies is an issue that we’ve been working with you, and with others here in D.C. on for the past year.  Specifically, we have been concerned about the Centers for Medicare and Medicaid implementing a provision to restrict access to complex and critical wheelchair components and accessories. The provision was set to go into effect on January 1, 2016.  In a show of support for access to these critical technologies — Congress included in S. 2425, the “Patient Access and Medicare Protection Act” a one-year delay preventing CMS from implementing this restrictive provision!  

While Congress did not include a permanent fix for the problem this one-year delay provides UCP, along with others in the community, the opportunity in 2016 to further our work on the wheelchair accessories issue and in establishing needed improvements overall for reimbursement of complex rehabilitation technology within Medicare and other health insurance programs. We will continue to update and talk to you over the course of the year on how to engage on this important issue!

 

Workforce

In the next few weeks, each of the 50 states will be releasing their Workforce Innovation and Opportunity Act plans for public review and comment. Last year, a new law called the Workforce Innovation and Opportunity Act (WIOA) was passed. This new law is vital for the 1-in-5 Americans who have a disability, as it requires the entire workforce system to become accessible for people with disabilities.

Every state must create a Unified Integrated State Workforce Plan before March 2016. Once a state has completed their plan, they must publish it online. There is an opportunity for organizations to review their state plan and for public comment about the ways each respected plan can help people enter the workforce. This means a state plan that will be inclusive of the most integrated job opportunities for people with disabilities.

 

We are working with others in the community to create tools and guidance for our affiliates and individuals to submit comments and will circulate in the coming weeks.

 

March is National Developmental Disability Awareness Month

March is National Developmental Disabilities Awareness Month. We will be collaborating with other disability organizations to promote a social media campaign to highlight the many ways in which people with and without developmental disabilities come together to form strong, diverse communities. The goal will be to raise awareness about the inclusion of people with developmental disabilities in all facets of community life, as well as awareness to the barriers that people with disabilities still face in connecting to the communities in which they live.

Stay tuned for more information, including dates for webinars on how to become involved, tools for posting on social media and more information on how to engage and leverage this campaign!

UCP Responds to Delay of Home Care Final Rule Enforcement

United Cerebral Palsy (UCP) is pleased to hear that the Department of Labor will delay enforcement of the final rule they issued tightening the Fair Labor Standards Act last fall for six months. The final rule significantly narrowed the “companionship exemption” to give nationwide minimum wage and overtime protections for in-home, direct support caregivers.

At the time the rule was issued, UCP made a statement warning of the serious potential consequences people with disabilities and their families faced. Many services provided by caregivers are reimbursed by Medicaid – which, in many states, does not allow for overtime. In these cases, the options for people with disabilities living in the community would be limited and result in more individuals winding up in costly institutions. We urged Medicaid agencies to set reimbursement rates that would enable caregivers to continue to provide the critical support people with disabilities need to live at home.

“We expect at this point that the Department of Labor will assess the potential harm this may cause for people with disabilities and their families. We are hopeful that the manner and timing of the enforcement protects both caregivers and the families they are serving,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “We want to see those caregivers fairly compensated for their work, but we don’t want that to come at the cost of someone else’s independence. We have come so far in helping individuals remain in their homes instead of being confined to institutions. It would be a shame if the unintended consequences of this rule unraveled that.”