The Arc Responds to President’s Committee for People with Intellectual Disabilities 2017 Report

Washington, DC – Earlier this month, the President’s Committee for People with Intellectual Disabilities (PCPID) released the 2017 report “America’s Direct Support Workforce Crisis: Effects on People with Intellectual Disabilities, Families, Communities and the U.S. Economy”. The Arc released the following statement in response to the report:

“Direct support professionals play a vital role in the lives of people with intellectual disability and their families, yet as this report outlines, we are facing a crisis when it comes to recruitment and retention in this essential field. These highly skilled workers allow many individuals with intellectual disability to live, work, and learn in the community and lead self-directed lives. But increasingly, our community is losing these vital workers to higher-paying, less demanding jobs where proper training and competitive benefits are provided.

“Nationally the shortage of direct support professionals is a priority initiative for The Arc and our chapter network. We are grateful that this report not only sheds light on this growing epidemic but also offers tangible solutions to the Trump Administration. As this crisis continues, individuals with intellectual disability and their families face uncertainty and anxiety. The Arc and our chapter network remain a resource as we work to address this crisis nationally, but we encourage prompt and immediate action,” said Peter V. Berns, CEO of The Arc and member of PCPID.

The Arc’s Direct Support Professional (DSP) Toolkit is highlighted in the report. The toolkit was created to support chapters of The Arc with DSP retention and recruitment. This tool was developed and used in pilot demonstrations conducted by the Research and Training Center on Community Living at the University of Minnesota.
The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc Responds to House Passage of the Americans with Disabilities (ADA) Education and Reform Act

Washington, DC – Today, the House of Representatives passed HR 620, the Americans with Disabilities (ADA) Education and Reform Act, a bill that would create additional requirements for filing lawsuits under the ADA. The Arc released the following statement in response to the passage of the bill:

“Individuals with disabilities have faced decades of discrimination, abuse, segregation, and neglect which the ADA was designed to help counter. This sham of a bill weakens the civil rights protections people with disabilities rely on and undermines the opportunities for inclusion made possible by the ADA. The disregard that the authors and supporters of this bill have shown for people with disabilities is an assault on civil rights and an attack on citizens with disabilities.

“Our nation leads the world in respecting and valuing the lives of people with disabilities, fighting tirelessly to promote their rights through landmark legislation like the ADA. This bill is the first step in a dangerous direction and it is unknown where it may lead us. To erase decades of progress is a shameful betrayal of our nation’s values. While there is not a Senate version of this bill yet, we call on our Senators to do the right thing and oppose any attempts to roll back the protections of the ADA. They are our last line of defense against this attack on the civil rights of individuals with disabilities in America,” said Peter Berns, CEO of The Arc.

If HR 620 becomes law, a person with a disability who is denied access to a business would have to send a letter notifying the business that it is inaccessible and out of compliance with the ADA. The business would then have 60 days to respond and 120 days to make “substantial progress” toward fixing the problem. Only if the business failed to acknowledge the notification or make substantial progress in fixing the violation, could the business be sued. This shift in responsibility for a law that has been on the books for more than 27 years is unacceptable. Complicating and lengthening the notification requirement, thereby restricting the rights of all people with disabilities to have the ADA enforced, further delays their access to and participation in their communities.

HR 620 was drafted in response to concerns about a small number of individuals who have filed ADA lawsuits for financial gain. It is important to note, however, that no monetary damages are available under the ADA; rather, damages are provided under state laws. Thus, HR 620 simply does not solve the problem it is intended to address. It’s only real impact is to dissuade and delay people with disabilities from enforcing their right to be free from discrimination. Excessive lawsuits filed for attorney fees should be addressed through other means aimed at the unscrupulous attorneys involved, not by diminishing the rights of people with disabilities.

 

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

It’s Peanut Butter Jelly Time!

Have volunteer activities gotten stale? Donating and shelving canned goods at food pantries or making and delivering meals are fun and meaningful activities that work so well that we seldom think outside the (donation) box. However, the time is always right to put a twist on these old favorites and create a new instant classic, as The Arc of South Carolina did this past MLK Day.

PB&J CompetitionThe Arc of South Carolina was awarded a 2017 MLK Day of Service* grant to provide food to members of the local community in need. The chapter decided to focus its activities in Lexington and Richland Counties, which continue to suffer from a lack of access to food and high levels of poverty since a flood in 2015.

On the 2017 MLK Day of Service, The Arc of South Carolina and The University of South Carolina’s Best Buddies Program teamed up for a one-of-a-kind event: a peanut butter and jelly sandwich-making competition.

Volunteers had a great time making sandwiches and competing with one another. Volunteers who could make the fast PB&J sandwich or make the most sandwiches in 1- to 5-minute intervals won event t-shirts.

But just like the two flavors of peanut butter and jelly come together to make one great taste, the best part of this event was the result. After the competition ended, volunteers worked together to distribute sandwiches to homeless people in the area and to families who frequent a local food pantry that was closed for the day. Because MLK Day is a federal holiday, many local food pantries and soup kitchens are closed; so, these sandwiches helped feed people who may have otherwise gone hungry.

The whole day was a smashing success, proving that creativity and community service go together like PB&J. For more on inclusive volunteering and how disability organizations can build partnerships that serve community needs and strengthen The Arc’s presence in the community, visit http://www.thearc.org/inclusive-volunteering.

*In 2015, The Arc was selected by the Corporation for National and Community Service (CNCS), the federal agency that leads the Martin Luther King, Jr. Day of Service, to plan and execute volunteer projects that unite Americans in service for the MLK Day of Service and throughout the year. To date, 16 chapters of The Arc around the country have organized inclusive volunteer service projects where people with intellectual and developmental disabilities (I/DD) volunteer alongside people without disabilities to provide food to people in their communities who are in need. In total, these projects have brought together over 1,000 volunteers to serve more than 14,000 people in need.

President Trump’s 2019 Budget Is Devastating for People With Disabilities

WASHINGTON, DC – Earlier this week, the Trump Administration released a budget proposal entitled “An American Budget”. The Arc released the following statement in response to the proposal:

“Yet again, the administration has laid out a plan that shows a complete disregard for people with intellectual and developmental disabilities and their families. This Budget confirms our worst fears about the Administration’s strategy of using drastic program cuts for people with disabilities to help to pay for the tax cuts for the wealthiest individuals and largest corporations, which were enacted through the Tax Cuts and Jobs Act last year.

“The President’s Budget would have a devastating impact on people with disabilities and their families with unprecedented cuts to Medicaid, Social Security, and many other programs that make community living possible for many people with disabilities.

“We spent the better part of last year fighting proposed cuts that could have dismantled decades of progress for people with disabilities in our nation. We remain vehemently opposed to proposals, like these from President Trump, that attack the systems of support that enable individuals with disabilities to live, work, and thrive in the community. The disability rights community will continue to rally our advocates to put a face on these issues. Last year we showed the force of our network and we will remain unified against future threats,” said Marty Ford, Senior Executive Officer, Public Policy, The Arc.

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc on Bipartisan, Two Year Budget Deal

The Arc is pleased that Congress was able to negotiate a bipartisan budget deal last week.  The deal provides welcome temporary relief for the non-defense discretionary part of the budget that funds a range of programs – such as education, housing, and employment – that help make community living possible for people with intellectual and developmental disabilities.  Further, by raising the debt ceiling though March of 2019, it provides a measure of stability that will allow Congress time to continue to develop appropriations legislation to keep the federal government operating.  However, despite these and many other beneficial provisions, The Arc remains concerned about future efforts to make program cuts in order to deal with the increased spending authorized in the deal and reduced revenue from the tax law enacted in December.

“Our Community Serves Each Other…”

There’s a reason for Dr. Martin Luther King, Jr.’s famous quote, “Everybody can be great because anybody can serve.” Community service, especially inclusive community service, does so much more than benefit the person receiving it. Inclusive community service creates opportunities to build and strengthen connections among members of the community who might not otherwise meet and work together. This was the case for The Arc of Davidson County and Greater Nashville, which organized activities with Upsilon Psi Omega Chapter of Alpha Kappa Alpha (AKA) Sorority and the Nashville IDD Housing Group.

In 2016, The Arc of Davidson County & Greater Nashville was awarded a MLK Day of Service* grant to provide food assistance to people in need in their community. The chapter reached out to Upsilon Psi Omega Chapter of Alpha Kappa Alpha (AKA) Sorority to plan an event for the MLK Jr. holiday. AKA, famous for its members Toni Morrison and Star Jones, and fabulous for its pink and green colors, is the oldest Greek organization founded by black women.

Community service is an important value of AKA, and members of the sorority and The Arc of Davidson County and Greater Nashville teamed up to commemorate Dr. Martin Luther King’s life and legacy by volunteering at Second Harvest Food Bank of Middle Tennessee in January 2017. All volunteers had a great time. AKA member Belva Weathersby shared, “as a volunteer it is important for me to make a difference, and to be able to see the difference I can make to someone’s life. By volunteering with The Arc Davidson County & Greater Nashville, I truly enjoyed my experience, and hope to volunteer again.”

The Arc of Davidson County and Greater Nashville continued volunteering in the spring, and reached out to the Nashville IDD Housing Group, a nonprofit that provides affordable housing to people with I/DD and students at Vanderbilt University’s School of Divinity. These residents live alongside one another in a supportive community. The chapter donated forty boxes of food to residents, who per Carolyn Naifeh, Co-Founder and Executive Director, Nashville IDD Housing Group, have food budgets as low as $30 each week.

Both The Arc of Davidson County and Greater Nashville’s experiences illustrate how The MLK Day of Service Project can act as a community web, weaving together members of AKA, Vanderbilt Divinity Students, and people with I/DD, who without the project might not have had reason to come together.

For more on inclusive volunteering and how disability organizations can build partnerships that serve community needs and strengthen The Arc’s presence in the community, visit http://www.thearc.org/inclusive-volunteering.

*In 2015, The Arc was selected by the Corporation for National and Community Service (CNCS), the federal agency that leads the Martin Luther King, Jr. Day of Service, to plan and execute volunteer projects that unite Americans in service for the MLK Day of Service and throughout the year. To date, 16 chapters of The Arc around the country have organized inclusive volunteer service projects where people with intellectual and developmental disabilities (I/DD) volunteer alongside people without disabilities to provide food to people in their communities who are in need. In total, these projects have brought together over 1,000 volunteers to serve more than 14,000 people in need. 

How The Family and Medical Leave Act Saved My Family

This is a new series at The Arc Blog called #HandsOff. Each month, we will feature a story from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives.

By: Debbi Harris

As we celebrate the 25th anniversary of the Family and Medical Leave Act (FMLA), I am compelled to reflect on the early and difficult birth of our son, Joshua, and the challenges that my family and I faced in securing the leave we needed to care for him. The FMLA allows covered employees to take up to 12 weeks of unpaid leave for certain family and medical reasons, generally with a guarantee to keep their job and benefits afterward. This Act has been invaluable for many people with disabilities and their families – and as you’ll learn from my story, its protections can sometimes mean the difference between the life and death of a loved one.

Josh and Debbi

Josh and Debbi
Photo by Jerry Smith

Josh was born in January of 1993, about 8 weeks before he was due. Complications immediately prior to and during labor led to an emergency C-section. With my husband Victor by my side, we learned upon his delivery that Josh had experienced a grade IV brain hemorrhage in utero, and had suffered from anoxia and hydrocephalus at birth as a result. The next few months in the NICU became a rollercoaster of medical ups and downs, as doctors tried to stabilize Joshua’s initial condition, while, at the same time, treat the morbidities that come with prematurity, along with the unanticipated medical effects of what would later emerge as Joshua’s disabilities.

At the time, I was working full-time as a technical writer and Victor was a full-time applications developer, under contract. We didn’t qualify for any financial supports and were unfamiliar with programs like Medicaid – but we were able to rely on the private insurance I received through my employer to provide Josh’s life-sustaining medical care. We also already had two children at home, making it imperative that both of us remain in our jobs to earn enough to support them, as well.

In the first year of his life, Josh had 10 surgeries and as many Pediatric Intensive Care Unit (PICU) hospitalizations for respiratory and shunt infections. Victor and I tried our best to juggle our jobs with daycare, Kindergarten, and Victor’s duties in the U.S. Marine Corps Reserve, all while bearing the anxiety and sadness of watching our youngest son go through this terrible ordeal. We spent countless days and nights at the hospital, often bringing our other boys along and letting them play with their toys underneath the giant metal PICU crib that held their little brother.

Despite the new stresses in our lives, I was determined to make up for any lost time at work and to meet my professional obligations. I never missed a deadline, even if that meant reporting to the office late at night and staying until the early hours of morning. It was exceedingly difficult. Still, my supervisors lacked compassion for our situation, and I feared what the loss of my job would mean for Josh – if we were to lose the health insurance that was, in those very moments, sustaining his life.

Fortunately, about a month after Josh was born – February 5, 1993 – the FMLA had become law. With the pressures at work mounting, and Joshua’s medical outcomes becoming less clear, I knew the FMLA would be my family’s last recourse to getting the time we needed to support our son.

At the time, the FMLA was new and awareness about the law was often low, including at my company. As I began to explore how to request time off through the FMLA, it became apparent very quickly that I would receive little to no support from my corporation in my decision. Even more shocking, my boss and some of my colleagues were openly critical of my need to take that time, implying that my son’s condition would simply create a lasting burden for the organization. Lack of knowledge created unwarranted fears and tension. My hope was only to have the time and resources to keep my son alive, and to give him the opportunity to thrive. Our family’s experience with Josh was a clear example of the need for the law.

Thankfully, I was ultimately able to use FMLA leave – but only after being required by my employer to first use up all of my vacation, sick time, and long- and short-term disability. Afterwards, when Josh was perhaps a year old the FMLA protected me from losing my job and our health insurance, meaning that Josh could continue to receive his vital medical care.

Josh’s needs were still critical when he first came home from the hospital at almost four months old. He was technology-dependent, needed constant skilled nursing assessment, and was discharged on ‘in lieu of hospitalization’ status. While he was prescribed home care nursing, it was difficult to find consistent, trained home care nurses, which forced me to decrease my hours to half-time and, ultimately, to work from home two days a week. After a trying period, my husband secured a job that provided us with benefits and enough income to support our family, which allowed me to resign from my job to care of our children full-time.

Without the protections offered by the FMLA, I cannot say whether Josh would still be with us – which is why I am grateful for the protections it offered us and why I will continue to speak out in support of its policies. As I reflect on our experience in fighting for leave in the months and years after Josh’s birth, I cannot help but think of how different our situation would have been if we were allowed paid family leave. The FMLA gives families like ours a chance to take care of their loved ones without bearing the repercussions of losing out on employment or health insurance. As the FMLA enters its 25th year, I believe that the next step – paid leave – should be a protected right of all working individuals.