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Disability and Aging Groups Join Senator Bob Casey and Hundreds of Care Advocates for a Save Medicaid Online Rally

/in /by The Arc

Washington, DC —Disability and aging groups were joined by Senator Bob Casey, care advocates, and nearly 500 activists from around the country for a Save Medicaid Online Rally on May 24. During the rally, attendees sent demands to Congress to stop any cuts to Medicaid, an essential program that 88 million Americans rely on for their health care, including 54 million older adults, children, and people with disabilities.

The rally, hosted by The Arc of the United States, Autism Society of America, Disability and Aging Collaborative (DAC), Consortium for Constituents with Disabilities (CCD), and Caring Across Generations, served as an opportunity for supporters to learn more about the harmful effects of work requirements and program cuts against Medicaid included in the Default On America Act. This rally is one of many actions supporters and care advocates across this country are participating in to save Medicaid, including last week when Caring Across Generations delivered 12,000 petitions and The Arc of the United States delivered 86,000 petitions demanding Congress put a stop to harmful cuts.

“Let’s call it like it is: the Default On America Act will directly harm millions of families across this country. I find it alarming that this extreme proposal will take Medicaid away from millions who do not meet new bureaucratic work requirements, including people who have a hard time finding work, such as family caregivers, older people over 50, and disabled people,” said Nicole Jorwic, chief of advocacy and campaigns at Caring Across Generations. “This plan puts a false choice in front of us: take care away from families, children, older adults, and disabled people or force a default that will disrupt Social Security checks and raise interest rates on credit cards, mortgages, and car payments. There is a better way: raise the debt ceiling cleanly and invest in the care we need by making the ultra-wealthy and big corporations pay their fair share.”

“Medicaid is a lifeline for people with disabilities, and its underfunding has already created a crisis of care,” shared David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “Many people with intellectual and developmental disabilities (IDD) have serious medical needs and already face barriers to accessing safety net programs and our health care systems. Millions of them are falling through the cracks right now because these complex systems have overwhelming red tape and years-long wait lists. Adding work requirements to Medicaid will only exacerbate disparities and discrimination against people with IDD and jeopardize their access to life-sustaining health care and community living.”

“The stakes have never been higher,” stated Christopher S. Banks, President and CEO of the Autism Society of America. “Cutting Medicaid will further exacerbate the current unacceptable waiting lists for services and support for people with Autism. Understandably, aging parents and caregivers have intense anxiety surrounding the fears of what will happen to their family members after they are gone. We must create equitable and accessible health care for Autistic individuals and the greater disability community.”

According to Carol Tyson, Chair of the Consortium for Constituents with Disabilities, “People with all types of disabilities rely on Medicaid for access to critical health care, and services and supports to live in, and contribute to the community. The evidence is clear that Medicaid work requirements are not effective. Medicaid work requirements would create unnecessary barriers and result in millions of the already underserved facing life-threatening cuts to essential coverage. Congress must prioritize the health and well-being of people with disabilities, and all those who rely on Medicaid and essential programs, by rejecting proposals that would cut Medicaid funding, impose work requirements, or restrict access to care.”

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About The Arc of the United States: The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. Founded in 1950 by parents who believed their children with IDD deserved more, The Arc is now a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes. Through the decades, The Arc has been at the forefront of advances in disability rights and supports. Visit thearc.org or follow us @TheArcUS to learn more. Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

About Autism Society of America: The Autism Society’s mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully. As the nation’s oldest leading grassroots Autism organization, the Autism Society and its approximately 70+ local affiliates serve over half a million members of the Autism community each year. It envisions a world where everyone in the Autism community is connected to the support they need, when they need it – including education, advocacy efforts, and supports and services throughout the lifespan. For more information, visit autismsociety.org.

About Disability and Aging Collaborative: The Disability and Aging Collaborative (DAC) is a coalition of approximately 40 national organizations that work together to advance long-term services and support policy at the federal level. Formed in 2009, the DAC was one of the first coordinated efforts to bring together disability, aging, and labor organizations.

About Consortium for Constituents with Disabilities: The Consortium for Constituents with Disabilities (CCD) is the largest coalition of national organizations working together to advocate for Federal public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society free from racism, ableism, sexism, and xenophobia, as well as LGBTQ+ based discrimination and religious intolerance.

About Caring Across Generations: Caring Across Generations is a national organization of family caregivers, care workers, disabled people, and aging adults working to transform the way we care in this country so that care is accessible, affordable and equitable— and our systems of care enable everyone to live and age with dignity. To achieve our vision, we transform cultural norms and narratives about aging, disability and care; win federal and state-level policies; and build power amongst the people touched by care. For more information, visit caringacross.org.

The torso of a young student wearing a light blue jean jacket over a white shirt. The student is holding three books and a notebook in their left hand and is wearing a backpack. You cannot see their face.

The Arc of Spokane: Empowering Parents To Be Better Advocates at School and Beyond

/in /by The Arc

The Arc of Spokane empowers and supports parents of adults and kids with disabilities through their Parent to Parent program. In 2022, the chapter saw an opportunity to expand their support of parents of school-aged kids with disabilities by leveraging grant funding to provide scholarships to The Arc@School’s Advocacy Curriculum.

The Advocacy Curriculum is a self-paced, online training, designed to support families in navigating the special education system. It takes users through the special education basics and prepares them to effectively advocate for appropriate educational services and supports.

Recently, we spoke with The Arc of Spokane’s Advocacy and Family Support Director, Jennifer Oliveri, and their Parent to Parent Coordinator, Tami Leitz. They shared how their idea to provide scholarships to the Advocacy Curriculum came to life, how their program works, and why they think other chapters can replicate this successful model.

Identifying a Need and an Opportunity

Tami: Part of my job involves parent training, and we have designated funds to help with that [through a grant from the county]. In the past, we were sending people across the state to an infant and early childhood conference, but it wasn’t very accessible for parents of children with disabilities—and it was also only for early childhood.

So, I talked to Jen, who’s my supervisor, and asked if we could think of some better ways to use the funds. One of the ideas we had was to give people scholarships to The Arc@School’s Advocacy Curriculum. We want to help as many people as possible, but it’s impossible to go to every IEP meeting, so the more people we can get educated about the law, the more we can ensure parents are able to hold school districts accountable. Jen loves new ideas and was on board with putting a proposal together.

Jennifer: We’re funded through Spokane County for parent training. So, we outlined a few ideas for them on different ways we could use the money, including Tami’s proposal. We know that IEPs are a top priority, but we wanted to give them a few choices. Thankfully, they approved the use of funds for IEP training. This means we are able to give scholarships to parents to access the Advocacy Curriculum for free.

Adapting the Program to Different Learning Styles

Tami: The first time we did this, I offered two options. Parents could either go through the online curriculum on their own, or they could come to a one-hour Zoom class on Tuesdays. We scheduled the Zoom classes during a lunch break time slot, and we would go through the online modules together. After each video, we would talk about any questions they had. Then, we would go through some additional PowerPoint slides I made with state and county specific information.

I made slides for each module because things can vary a lot from state to state. I wanted to make sure parents got information about things like how to access the birth-to-three program or what transition looks like in their area, because it can vary from school to school. After that, parents could stay on Zoom with me if they had personal questions. I did that every Tuesday for eight weeks with that group, and we went through the entire curriculum together.

“I highly recommend The Arc@School curriculum to parents of kids on IEPs and 504s. I learned so much!” – Alisha, WA

For some people, having that accountability works. But then you also have parents who are a little more independent, busier, and just happy to go through it on their own.

Empowering Families & Why Learning How to Advocate Is So Important

Tami: We really focus on empowerment and celebrating education. We don’t want families to feel like they’re powerless and the systems are impossible. Sometimes, I get people where maybe their child is 16 and they say, “Well, we’re almost done. What’s the point of learning this now?” But it’s still so important to learn how to advocate, because they’re going to be working in systems like this forever with their child. Parents will have to use this skill later in their journey when dealing with Supplemental Security Income (SSI) or the Developmental Disabilities Administration or vocational rehabilitation, so it’s never too late.

Empowering parents and caregivers with this information is vital. They are not being educated about their rights, so, often, their student’s education, relationships, and mental health suffer because of it. Schools regularly [don’t comply with the law], and most people—sometimes even the teachers—don’t realize it’s happening or how to intervene. When people understand their rights, advocate, and expect to be treated fairly, systems can change. This curriculum is important to support individual families, but on a larger scale, it’s the kind of resource we need in order to see systematic change.

Advice for Chapters Interested in Replicating This Program

Tami: One of the hardest things about an IEP is communicating the information to a student’s team from year to year. A new school year can feel like a total do-over to families. By empowering [them] with this information, it can save time for advocates and parent support professionals.
[It’s also helpful for] family resource coordinators, therapists working for school districts, and teachers to go through the curriculum. These professionals act as guides to families in schools, but many may not have had the opportunity to learn about special education law. The curriculum equips them with knowledge, but it can also give them a greater capacity for empathy by providing a better understanding of what people with disabilities are up against when trying to access services.

Jennifer: It’s like the adage of “teaching people to fish.” While we can provide one-on-one support to those seeking assistance with IEPs on a limited basis, in Spokane County specifically, there are hundreds of people who need assistance with understanding their rights when it comes to the school system. This model supports more people and gives them the lifelong tools to advocate with confidence. I don’t know if every chapter has extra funds necessarily [to start a similar program], but it could be worth it to look into grant funding to try to replicate this model.

Is your organization interested in learning more about how to start a similar program? Send us an email at school@thearc.org and a member of our team will get back to you.

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Special Education Is Complex. New Partnership Will Give Indiana and Maryland Families Free Support.

/in /by The Arc

Washington, DC, May 19, 2023 – From low expectations and a dire shortage of special educators to isolation and informal suspensions, a quality education is not easy to obtain for U.S. students with disabilities. Caregivers of children with disabilities must become experts at advocating for their children in order to get the support they need. Today, Lids Foundation announced that is providing a $50,000 grant to The Arc to give Indiana and Maryland families free access to The Arc@School, an evidence-based special education advocacy curriculum. This grant has the potential to help over 285,000 children with disabilities living in those states succeed and build bright futures.

The Individuals with Disabilities Education Act (IDEA) was enacted nearly 50 years ago with the goal of providing equal opportunities for students with disabilities. Yet this foundation for the special education system has long failed these students, many of whom don’t receive the education and support they need to thrive. There is also little to no guidance or support for families navigating these complex systems. Lack of access to a quality education continues to cause not only significant gaps in academic achievement for students with disabilities, but also life skills and socio-emotional development – particularly for those with intellectual and developmental disabilities.

The Arc@School was created in 2016 in response to decades of troubling testimonies from self-advocates. The Arc@School is a self-paced online training program that helps caregivers of children with disabilities navigate the special education system from birth through age 21. The Special Education Advocacy Curriculum teaches families their rights under the law, how to ensure the school writes and implements an effective individualized plan (IEP), and how to work with their school to get their accessibility and support needs met. The program has eight modules that total nearly 10 hours of training. The partnership with The Arc and Lids Foundation will be a catalyst for building nationwide power and skills among families so their children with disabilities are valued members of the school population, particularly marginalized communities whose voices are often ignored.

“We are thrilled to partner with Lids Foundation and The Arc of the United States to provide free access to The Arc@School’s Special Education Advocacy Curriculum,” said Ande Kolp, Executive Director of The Arc of Maryland. “This partnership will offer strong support to Maryland families interacting with these confusing and broken systems that continue to cause extraordinary disparities among students with disabilities and their peers.”

“The Lids Foundation is excited to partner with The Arc and their mission to protect the rights of people with intellectual and developmental disabilities,” said Sarah Lim, Executive Director of Lids Foundation. “As a Foundation, we seek to remove barriers that prevent people from being able to live their lives to the fullest potential and cannot wait to join in on and be a part of the solution for so many families through The Arc chapters in Indiana and Maryland.”

“The number of calls we are getting from families about special education issues is exploding,” said Karly Sciortino-Poulter, Director of The Arc Advocacy Network at The Arc of Indiana. “Some of the ways that schools are treating students with disabilities would blow your mind. Thanks to this partnership with Lids Foundation, we can educate Indiana families on their rights and help ensure their children get an appropriate education.”

Lids Foundation has its roots in Indiana and Maryland, which is why this one-year, $50,000 grant is opening doors to families in those states. In Maryland, there are 109,443 students utilizing special education resources, which is 12.4% of the total Pre-K through 12th grade population. In Indiana, there are 175,866 students utilizing special education resources, which is 16.96% of the Pre-K through 12th grade population.

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About The Arc of the United States: The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. The Arc has a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis. Visit www.thearc.org or follow us @TheArcUS to learn more. Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

About Lids & Lids Foundation: Lids Sports Group is the largest licensed sports retailer in North America, selling fan and fashion-oriented headwear and apparel across the North America, Europe and Australia through over 1,500 retail locations. The Lids Foundation provides support directly to local communities and to the charitable organizations that serve them to enable community members of all ages to live more active, healthy, and productive lives. Visit www.lids.com or www.lidsfoundation.org to learn more.

Media Contact: Jackie Dilworth, dilworth@thearc.org

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Schools Are Restraining and Secluding Students With Disabilities. New Bill Would Limit Practices.

/in /by The Arc

Students with disabilities disproportionately experience restraint and seclusion, practices that are not evidence-based and cause lasting trauma.

Washington, DC, May 18, 2023 – Restraint and seclusion are traumatic, outdated, and ineffective discipline practices that are commonplace in schools throughout the country. Even though they have caused thousands of injuries and deaths, there are no federal laws to protect children from the abusive use of these tactics. Today, Senator Chris Murphy and Representative Don Beyer reintroduced the Keeping All Students Safe Act (KASSA) for the 14th Congress in a row. KASSA would eliminate the use of seclusion and prohibit the practice of restraint in most cases and give parents a private right of action against school districts that misuse these practices. Restraint and seclusion are disproportionately used against students with disabilities, particularly Black students, and have long-lasting consequences on their achievement and health. We urge Congress to once and for all pass minimum federal safety standards for these practices.

“Protecting students with disabilities from physical harm and abuse shouldn’t be a debate, but it’s something we’ve been fighting for over a decade,” shared Robyn Linscott, Director of Education and Family Policy at The Arc of the United States. “Instead of evidence-based de-escalation practices, untrained school personnel are subjecting students with disabilities to terrifying violations of their human rights and their lives. Thousands of times a day, students are being locked in closets and bathrooms, pinned to the ground, restrained with mechanical devices for hours, and worse. These practices are life-threatening and they’re denying students with disabilities a full and safe inclusion in our education system. Now is the time for elected officials to show their constituents that their safety in school matters.”

Restraint is intended to be used as a last resort in emergencies when there is a threat of imminent physical harm. Too often, it is used for minor behavioral issues, not complying with instructions, or even to punish manifestations of a child’s disability. Over 101,990 students, the majority of which are students with disabilities, are subjected to restraint and seclusion every year, a number that experts agree is drastically underreported. Students with disabilities represent 13% of the student population, but account for roughly 80% of those subjected to restraint and 77% subjected to seclusion. Some students are repeatedly restrained and secluded despite the fact that there is no evidence these tactics are effective in reducing the occurrence of the behaviors being punished. A patchwork of state policies and a lack of federal oversight and accountability allow these practices to continue freely.

To make matters worse, many parents are not notified at all or in a timely manner after their child is subjected to restraint or seclusion. In some cases, parents have gone weeks or years without knowing these disciplinary tactics were used against their child. This is particularly challenging for parents of children with intellectual and developmental disabilities, many of whom are not able to communicate what happened to them. KASSA would ensure parents are notified of an incident of restraint within 24 hours.

Since 2009, the Keeping All Students Safe Act (KASSA) has been introduced every Congress, but it has not garnered the support it needs to pass. Restraint and seclusion are serious civil rights issues affecting students with disabilities proportionately. KASSA would create federal standards around the use of these practices, empower families when their rights are violated, and offer a variety of supports and contingency plans to help teachers and school personnel effectively respond to medical and behavioral needs.

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About The Arc of the United States: The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. Founded in 1950 by parents who believed their children with IDD deserved more, The Arc is now a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes. Through the decades, The Arc has been at the forefront of advances in disability rights and supports. Visit thearc.org or follow us @TheArcUS to learn more. Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Media Contact: Jackie Dilworth, dilworth@thearc.org

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Voting and Civil Rights Groups Challenge Inequity in Access to Voting Under Georgia Law

/in /by The Arc

Organizations Seek Emergency Relief to Ensure the Rights of Georgia Voters With Disabilities Are Protected in Time for the 2024 Elections

Washington, DC – Voting and civil rights groups filed an emergency preliminary injunction motion seeking to lift restrictions in Georgia’s anti-voter law, S.B. 202, that target voters with disabilities. These S.B 202 provisions violate the Americans with Disabilities Act and Rehabilitation Act by unjustly burdening—and in some cases completely disenfranchising—Georgians with disabilities and denying them a full and equal opportunity to access and participate in the state’s elections. If granted, the preliminary injunction would help voters with disabilities have equal access to absentee voting in Georgia in the upcoming 2024 elections and allow counties to again provide drop boxes in locations that are accessible.

The American Civil Liberties Union, the American Civil Liberties Union of Georgia, the Legal Defense and Fund (LDF), Southern Poverty Law Center, The Arc of the United States, WilmerHale, and Davis Wright Tremaine LLP represent Georgians with disabilities seeking full political participation and equal access to voting in the state.

The preliminary injunction filed in the federal district court for the Northern district of Georgia in Atlanta asks the court to block two provisions of S.B. 202:

  1. A provision that makes it a felony for friends, neighbors, and even some institutional staff (among others) to help a person with a disability return their absentee ballot.
  2. A provision that requires counties to move ballot drop boxes from easily accessible outdoor locations to indoor locations that are more difficult for many people with disabilities to reach and limits the hours they can be used.

Zan Thornton, co-chair of Georgia ADAPT: “It’s essential that we stop S.B. 202 from infringing on our rights. We need this injunction to preserve our right to vote as disabled citizens of Georgia. In 2022, ADAPT got an avalanche of requests for rides from disabled people across Georgia who couldn’t cast their absentee ballots easily and needed to travel to the polls instead. That dramatic rise in barriers facing disabled voters of Georgia underscores the need for an injunction before 2024.”

Shannon Mattox, state director for The Arc Georgia: “S.B. 202 erects barriers that make it harder for Georgians with disabilities, especially people of African descent, to vote, which is a violation of their civil rights. People with disabilities in Georgia are entitled to equal access in voting and have the right to vote on issues that matter to them. We’ll continue to do everything in our power to ensure the rights of Georgians with disabilities are protected and enforced.”

Devon Orland, litigation director for the Georgia Advocacy Office: “Voting is a fundamental right. These laws were changed without thought for people who experience disabilities and the challenges they face accessing transportation, technology and care. Choosing to make access to a fundamental right harder is not only illegal, it is the antithesis of the foundational pillars of democracy.”

Brian Dimmick, senior staff attorney with the ACLU’s Disability Rights Program: “There are hundreds of thousands of voters with disabilities in Georgia, and many of them face challenges in voting in person and so rely on absentee voting. Instead of making absentee voting easier and more accessible, SB 202 puts new barriers in the way of voters with disabilities trying to exercise their fundamental right. We need the court to protect voters with disabilities by restoring the more accessible voting rules that were in place before SB 202.”

Caitlin May, voting rights staff attorney with the ACLU of GA: “With the passage of SB 202, Georgia has added barriers to voting for people with disabilities rather than making it easier for them to cast their ballots. It is unconscionable that SB 202 drastically reduces options Georgians with disabilities rely on to make their voices heard in elections. Today we’re filing to block some of the policies making the vote inaccessible to many Georgia voters, and hope that we can move towards expanding that access in the future.”

Poy Winichakul, senior staff attorney for voting rights with Southern Poverty Law Center: “S.B. 202 has created barrier after barrier for Georgia voters, restricting nearly every method of voting available to them. These cruel barriers to voting, enacted by the state’s supermajority legislature, especially target people of color and people with disabilities and violate their fundamental rights. We will continue to challenge this anti-voter law until all Georgians have full and equitable access to voting.”

John Cusick, Assistant Counsel, LDF: “S.B. 202 criminalizes aspects of the voting process and otherwise ensures that it’s difficult, if not impossible, for voters with disabilities, who include Black people, from accessing the ballot box. We are grateful that hard-won statutes enforcing civil rights like the Americans with Disabilities Act and Rehabilitation Act exist.”

By mandating that counties place drop boxes inside buildings and close them after business hours, Georgia makes voting an onerous ordeal for some voters with disabilities and completely impossible for others. A preliminary injunction is necessary to ensure voters with disabilities are not denied equal access to absentee voting in Georgia in the upcoming 2024 elections. Here, the Court should require Georgia to stop enforcing the confusing, chilling felony provisions and allow counties to provide accessible drop boxes.

The motion was filed as part of ongoing litigation in AME Church v. Kemp, which challenges S.B. 202 for illegally creating barriers to voting that diminish the voices of communities of color, women, and people with disabilities. Plaintiffs are the Sixth District of the American Methodist Episcopal Church, Delta Sigma Theta Sorority, Georgia ADAPT, and the Georgia Advocacy Office, represented by the ACLU of Georgia, ACLU, LDF, and Wilmer Hale, as well as the Georgia Muslim Voter Project, Women Watch Afrika, Latino Community Fund of Georgia, and The Arc Georgia, represented by SPLC, The Arc of the United States, and DWT.

CONTACTS:
Jackie Dilworth, The Arc, 240-593-5529, dilworth@thearc.org
Rotimi Adeoye, ACLU, 267-221-0828, radeoye@aclu.org
Evan Nowell, SPLC, 470-656-9395, evan.nowell@splcenter.org
Ella Wiley, LDF, 925-819-0555, ewiley@naacpldf.org

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Private Duty Nursing Makes Community Living Possible: How You Can Help!

/in /by The Arc

For Jennifer, home health nurses hold her family together. Nurses come to her home and care for her 11-year-old child’s medical needs. They help ensure that her child’s tracheostomy (a surgically created hole in his neck) and ventilator are both working so he can breathe. Because of this care, her child can experience his childhood at home—riding his bike, going to school, and playing with friends.

Around the country, thousands of people with disabilities and families like Jennifer’s rely on private duty nursing to help their family members live at home and stay financially stable.

Private duty nursing is care provided by a registered nurse or licensed practical nurse to someone who has complex medical needs. A private duty nurse performs skilled care in a person’s home that is typically provided in a hospital or nursing home. Nurses may help monitor and ensure that ventilators and tracheostomies are working, change and monitor feeding tubes, provide IV therapy, and more.

Children and adults with disabilities who need these services rely on private duty nurses in order to live at home in their communities. Otherwise, they may be forced into an institution or nursing home—away from their families—and often have a lower quality of life and social inclusion.

For parents and family members, private duty nurses help the family stay intact. For Pamela from New Jersey, “The home health care nurses change our lives every shift they show up. I get the chance to just be mom, not nurse or therapist, and I can be more present for my older son.”

Private duty nurses also help families remain financially stable and parents remain employed. When their third child, Josh, was born and had significant medical needs, Debbi and Victor struggled to hold onto their jobs. Victor was often called away for active military duty. Debbi worked through the night to meet her deadlines and keep the health insurance they relied on for Josh’s care. “That insurance, it was always in the back of my mind, was what was keeping Josh alive.” The challenges of balancing work and family caregiving responsibilities began to mount. Debbi struggled to get approved for unpaid leave and as Josh’s care needs increased, Debbi had to reduce her working hours substantially. This was a financial burden for the entire family and increased her worry about losing her job altogether.

For many families nationwide, parents are forced to leave work to care for their family members who are medically complex. Pamela concedes, “Our son’s medical needs are left for us to manage; often at the cost of one parent having to leave behind their career.” It doesn’t help that there is still a lack of state paid family leave programs across the country.

Right now, 50 to 70% of private duty nursing shifts nationwide are going unfilled. This is causing additional pressure and stress for the families who need it.

The home skilled nursing workforce is experiencing a shortage similar to that of the general nursing and direct care worker communities, and Medicaid is often unable to pay nurses at the wages they could get in a hospital.

The result is that people with medical complexities are being hospitalized with avoidable complications, and parents and caregivers are being forced to leave their careers behind to care for their loved ones or to make the difficult decision to put their family members into an institution.

How You Can Help

Protect Medicaid from any cuts so that people eligible for private duty nursing receive their services.

Any potential Medicaid cuts could make access to private duty nurses even more difficult. The stability of families and quality of life for children and adults with medical complexities is at stake. Support proposals at the state and federal levels that would improve pay and benefits for private duty nurses and other members of the direct care workforce. Two major federal bills are the Better Care Better Jobs Act and the HCBS Access Act.

Support universal paid family leave that includes siblings and other family members.

The Paid Family Leave Act would help parents and family members stay employed while they balance work and provide the needed care to their family members with medical complexities when they cannot find a nurse. Some states nationwide are working to pass legislation to provide different variations of paid family leave. Contact your local legislators or state chapters of The Arc to support those bills.

A white woman with blonde hair to her shouldersstands smiling with her arms at her sides in front of an office desk cubicle. She is wearing a white t shirt, black pants, and white shoes.

When Small Talk With a Stranger Led to a Thriving Career: Amy’s Story

/in /by Pam Katz

A white woman with blonde hair stands smiling with her arms at her sides in front of an office desk cubicle. She is wearing a white t shirt, black pants, and white shoes. After graduating from high school and realizing college wasn’t the right path for her, Amy—who has a learning disability—knew she was ready to begin building her career. She started with typical jobs for young adults, working at Bath and Body Works and Giant Food for several years while taking classes at the local community college until a chance meeting in the college parking lot changed her life.

Amy encountered a woman in the parking lot and engaged in some polite small talk. Serendipitously, the woman’s daughter also had a disability and was currently seeking a job. She had contacted a program called Project SEARCH, and the woman passed the information for the program along to Amy.

Project SEARCH is an employment program for people with disabilities that aims to train and place each participant in competitive and rewarding employment through a series of internship rotations. As an added bonus of the program, the placements help demonstrate to businesses the long-term value of hiring people with disabilities and the wide range of jobs they can be successful in.

Amy enrolled in the program and began her placements, including one at the Montgomery County Department of Finance Treasury Division.

Amy and her assigned employee mentor MaryAnn got along right away—she even had chocolate and a pen ready for Amy’s first day. They got to work learning about homestead compliance and correcting records in the department’s system. Amy learned what it took to succeed in an office job and focused on building skills and making herself an asset to the department.

Amy chose to pursue a Treasury Department job after all of her rotations were done and was thrilled to secure a full-time, competitive job there where she thrived in an environment where people believed in and supported her to succeed. Amy notes “When I first got hired, I was so grateful. I didn’t say it, but inside deep down, because I didn’t really know if it was going to happen. I felt really focused.”

Now 32 years old, Amy is still at the same job enjoying her work, and is optimistic about what her future holds.

“I like everyone I work with. They like working with me too. I am most proud of working on property tax refunds. I research accounts ahead of time to figure out who is eligible for a refund, and then take their information and add the record into our system so it can move to the next step. I’ve gotten better at it over the course of my time there and I like working in Excel.

I’m coming up on my 10-year anniversary, which makes me proud. I do think about the future and maybe learning more skills. It’s been quite the journey.

I have a job coach I see during work, but I live by myself. I have a one-bedroom, and my parents help me with things and have been supportive. They retired to Florida, and I miss them a lot. They come up and visit, and I fly down to stay with them.

When I’m not working, I like to run. It helps me. I don’t get to do it often because of my job, but anytime I can do it, it helps me think better. I like to hang out with friends—it’s good to be social.

Having a job allows me to be independent, buy groceries, pay housing expenses, and go out to dinner with friends.

I hope people don’t give up on their dreams and their goals. It’s very important to work and try to make a good life for yourself.”