As parents of adult children with intellectual and developmental disabilities (IDD) grow older, they may face concerns about what their child’s life will look like when they are no longer able to provide care. Certain questions become important and can be agonizing to think about, such as:

• How will my child’s life change when I’m gone?
• Where will they live?
• Who will pay for the things they need?

For Roy, these questions are all too familiar.

The first time Roy and his wife, Arleen, heard the word autism was in 1963. The high school sweethearts had been married just two years and they were told their son, Roy Jr., who was only a year old, had autism.” After Roy Jr., Arleen and Roy had two more sons, Michael and Glenn, and all three children would eventually be diagnosed with autism and fragile X syndrome.

In those days, institutions were the only options in New York state for people with disabilities. Looking for the best care for their sons, Roy and Arleen visited the Willowbrook State School. The deplorable conditions shook the couple to their core. Roy and Arleen made a vow to each other that day: each of their sons would live at home with their parents all their lives.

The visit to Willowbrook was a turning point in Roy and Arleen’s lives. The family devoted themselves to advocating for their children and others with IDD. Thanks to their advocacy efforts, Roy Jr., Michael, and Glenn attended IDD parent-founded provider agency schools until the Individuals with Disabilities Education Act (IDEA) was enacted in 1976. IDEA guarantees students with disabilities the right to a free and appropriate public education—and after it was passed, the three boys were able to attend public school.

Twelve years ago, Roy’s “dear cherished bride” of 50 years passed away, leaving Roy to care for his three sons alone. After several years of advocacy, Roy received approval from his state agency to convert his home into a certified group home for his three sons and two other men. In 2019, when the family’s in-home residential services were ended by the provider who had served them for 20 years, Roy set up self-directed care for his sons and became an immediate supervisor for a staff of seven.

Since then, Roy Jr. and Glenn have both passed away. While both lived at home until their passing, they suffered at the hands of an underfunded system of care. Despite these losses and challenges, Roy has remained steadfast in his commitment to keeping his middle son, Michael, in his own home all his life.

Four people have been selected and approved to live with Michael. However, for the past two years, the agency Roy is working with to run the group home has been prevented from opening because they are unable to hire staff at the low salary rate authorized by Medicaid for this type of home. On average, direct care workers get paid just $14 an hour, which is much lower than the hourly rates for similar jobs.

Roy is doing all he can to help plan for Michael’s future. He’s now 84 and Michael will be 60 this summer. Roy wants to ensure Michael is safe at home. For that to happen, Congress must invest in critical supports for people with IDD.

Millions of people with disabilities, like Roy’s son, Michael, rely on Medicaid home and community-based services to live at home in their communities. But due to the fact that Medicaid must fund institutions, and home and community-based services (HCBS) are optional, states don’t have the funding to support everyone in the community.

To change this, Congress must invest in HCBS now!

Roy’s efforts to ensure his son can live at home in his community should not be hindered by decisions in Congress and a lack of investment in disability services.

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.

Medicaid is the nation’s primary health insurance program for people with disabilities, but it is so much more than health care. For individuals with disabilities and their families, Medicaid also funds vital supports to keep them in their communities.

People with disabilities who are eligible for Medicaid often live in or near poverty. They rely on Medicaid for stability, support, and services. However, Medicaid can be extremely challenging to navigate—requiring people to spend significant time and effort learning how the system works, how to complete all of the necessary paperwork, and waiting for appointments to access critical care and services. If people are unable to navigate these challenges, they risk losing essential care, services, and stability.

In 2022, The Arc and its chapters asked families nationwide about their challenges navigating Medicaid.

Terri, who has a child with Down syndrome, notes that complications with the Medicaid application process have meant her family has “missed out on eight years of having co-pays covered, on financial support for the diapers her son wore until he was seven, and on assistive devices to help him walk and talk. Despite being well-educated, I found the paperwork really daunting,” says Terri. “The cynic in me wondered if it was complicated by design, to frustrate people from applying.”

Frances, a self-advocate from Colorado, has received Medicaid for over 40 years. Still, she encounters many difficulties in navigating the Medicaid system. According to Frances, “It is frustrating because I do not know what my co-pay is on a doctor visit and I will receive a bill that I do not understand. When I call to ask for more information, it is often hard to talk to a person and get a call back when I leave a message.”

Many people on Medicaid are required to reapply or prove they are still eligible for services on a yearly or even semi-annual basis. For Frances, this is the biggest barrier. “I have to work with the Department of Human Services and submit proof of housing and income,” she says. “But because they are not meeting with people in person, I have to fax these documents, and it is very difficult to get a hold of someone at the office to do this. I wish I could submit this paperwork in person.”

Monique, a disability professional from California, recounts the difficulties of trying to get a specialized wheelchair through the Medicaid system for an individual with Parkinson’s disease. Monique notes that it took “multiple months to get the process started.” This long wait time meant the person with a disability had to use a rented wheelchair “which was not adequate for [him] and his staff.” By the time the chair arrived over a year later, the man was already in a nursing home. “[He] died a week later,” says Monique. “[He] never even sat in his wheelchair or was able to see it.”

In the coming months, navigating Medicaid will likely get even more complicated. There have been special rules in place to protect people from losing Medicaid during the COVID-19 pandemic. In April 2023, these rules will end, and states will likely begin kicking millions of people off Medicaid.

Accessing Medicaid should be made easier, not harder. The Arc will continue to advocate to strengthen and protect Medicaid for people with disabilities and their families so that everyone can navigate it and access this vital support.