Policy Impact Project team
The Issue
In the United States, there are over 500,000 people with intellectual and developmental disabilities (I/DD) waiting to access home and community-based support services, with waitlists keeping people in the queue for services for long as 10 years. Without community-based and home-based support services, Americans with disabilities have little to no supports they need to live in our communities. Lack of access to services affects the well-being of both people with I/DD and those who care for them. The waitlist issue has existed for a long time but is now becoming a crisis given the growing number of aging parents and the declining numbers of direct support workers.
Pennsylvania is just one example of this national issue. In Pennsylvania, there are currently 12,418 people with I/DD waiting to access community supports and services. The average number of years individuals spend on the waitlist in Pennsylvania, 2.3 years as of 2021, might be lower than the national average, but is still harmful to the 5,409 adults with I/DD in Pennsylvania currently deemed “at-risk” and in need of emergency support services immediately or within 6 months.
What are HCBS Waivers and What Do They Do?
Medicaid home and community-based services (HCBS) waivers provide an array of long-term services for individuals with I/DD and other diagnoses who might otherwise be at risk of placement in an institutional setting. HCBS have empirically demonstrated better outcomes in terms of life skills: self-care, vocational skills, sociability, etc. for people with disabilities. HCBS are crucial for maintaining community engagement and independent living for people with disabilities.
These programs benefit both adults with disabilities as well as their families and caregivers. As the needs of adults with various disabilities change, so do their needed services. More specifically, individuals with disabilities who have supportive family or caregivers might live receive home health aide assistance to enable them to live on their own or with family but could need increased residential support as their parents and caregivers age. Experiencing both the structure and engagement of community outings, such as visiting the mall, working, or eating in a public space—things we all might take for granted—are vital social supports for the enrichment and well-being. Additionally, the independence that adults with disabilities experience eases the around-the-clock care some families must provide and offers reassurance of the security and safety of their loved one’s future.
Why are People Waiting?
HCBS waivers are allocated to each state through the Centers for Medicare & Medicaid Services (CMS). For each waiver a state operates, there are a limited number of waiver “slots”, and people must qualify for a waiver slot based on need and other eligibility criteria. Some states have lengthy waitlists of people who need to access these waiver services. Pennsylvania has gradually shortened the waitlist from 4 years to 2, as a result of increased funding. States often categorize applicants by their level of need or how soon they will need services – such as emergency or at-risk (need assistance in less than 6 months), critical (need assistance in 6 months to 2 years) or planning (need assistance within the next 2-5 years). But these categories might not be accurate reflections of the needs many disabled adults and their families feel. Ideally, states should strive for a waitlist of less than 6 months for all individuals, so that people can receive the support they need, when they need it.
Family, Fear, and the Future
For both individuals and their caregivers, lack of access to services and supports can feel overwhelming. Parents and caregivers experience a multitude of emotions, and must balance feelings of distrust, fear of the future, loss of privacy, social isolation, and physical exhaustion when trying to meet the needs of loved ones with high levels of support needs.
In addition, many parents and caregivers of disabled adults must consider their future needs. For example, approximately 3,400 adults with IDD in Pennsylvania live with a caregiver over the age of 60. Parents are left wondering what will happen when they are no longer able to provide care. Who will look after their loved one? Where will they go? Placing thousands of at-risk adults with disabilities on waitlists denies access of care and services and creates fear about the future.
What the Future Holds
What can we do today to support the rights of people with disabilities to receive to timely services? We can speak up and share our stories, insights, and data. Decision makers need to be aware of the crisis that waitlists have become. Some have no awareness of what HCBS are, or their importance to people with disabilities.
We also need solutions to building up the direct support workforce, including better pay and reimbursement rates. Too often, families ARE the direct support workforce, but they need tangible supports to be able to continue providing care and maintain their own employment (if applicable).
Finally, ask for information. Learn more. And more. Find out whether HCBS waiver waitlists exist in your state. How many people are on the list? What is available to support individuals while they are waiting? Are there advocacy organizations in your state that are focused on waitlists? What steps are needed to reduce the waitlist? Information is power. Ask questions yourself or decision makers in your state to find out for you.
Together we can end the wait.
Acknowledgement: Thank you to Victoria Wible for conceptualizing this blog and contributing to the writing.