Addressing the Growing Problem of Service Discontinuity for Transition Age Youth with IDD

Ron Manderscheid, PhD

Adjunct Professor

University of Southern California

&

Johns Hopkins University

The behavioral health field must improve understanding and capacity to respond to intellectual and developmental disabilities (IDD) as we go forward. There are several cogent reasons for doing so: Up to half of those with IDD conditions also have behavioral health conditions such as depression and anxiety; no clear line exists between behavioral health and IDD conditions, e.g., how should attention deficit hyperactivity disorders and autism spectrum disorders be classified?; many young adults with IDD and behavioral health conditions now are aging out of child services and sometimes become homeless or even incarcerated.

The problem of developing this capacity in behavioral health is compounded by the reality that the epidemiology of IDD conditions and care is very weak. One need only spend a few minutes in this literature to realize that definitions and estimates vary considerably among sources. Further, it is practically impossible to connect condition estimates to care estimates to effect estimates.

With these constraints in mind, let me offer a few macro numbers. Almost 1 in 5 children and youth, ages 3-17, or about 13 million young people, have an IDD. Sources generally concur that this population is growing over time. Approximately 7.3 million children, youth, and young adults, ages 3-21, receive services through an Individuals with Disabilities Education Act (IDEA) plan designed specifically for them. From these demographics and prevalence figures, one also can infer that about 1 million young adults with an IDD are “aging out” of child services each year.

What happens to those who age out of child services? Having an IDD is a risk factor for homelessness. Of the 500,000 persons who are homeless in the US, an estimated 200,000 have an IDD. Similarly, having an IDD is a risk factor for incarceration. Of the 730,000 people in city and county jails each night, an estimated 30-73 thousand have an IDD. For prisons, the estimate is 210,000 out of a total population of 550,000. The annual rate at which new persons with an IDD enter these settings is unknown at present.

We have understood for some time that an effective warm handoff between child and adult services would address many of the issues faced by transition age youth with IDD. Such a handoff should result in the services of a community-based care coordinator, as well as care and support services that promote a full life in the community. Frequently, these are called long-term supports and services (LTSS). Depending upon the specific needs of an individual, this package may include assistance with daily activities, such as getting dressed, taking medication, preparing meals, job coaching, residential supports, and managing money.

For the past four years the American Network of Community Options and Resources (ANCOR) has conducted a survey, the State of America’s Direct Support Workforce Crisis, for organizations that provide these services through direct service professionals. The findings from the 2023 survey are shocking:

--95% indicated they had experienced moderate or severe staffing shortages in the past year.

--More than half (54%) indicated they deliver services in an area where few or no other providers deliver similar services.

--More than three-fourths (77%) reported turning away new referrals in the past year due to ongoing staffing shortages.

--72% reported that they had experienced difficulties adhering to established quality standards due to ongoing staffing challenges.

--Of those that reported offering case management services, fully three-fourths indicated they had experienced difficulties connecting people with services due to a lack of available providers.

And what about funding for these services?

Medicaid is clearly the largest source of funding for LTSS for persons with disabilities. However, individuals who want to receive their LTSS in community settings are not entitled to home and community-based services (HCBS). States have the option — but are not required — to fund HCBS programs, and the demand greatly outpaces the availability, creating waiting lists and an unknown number of people who are not even on the radar of the service delivery system.

Currently, over 500,000 people with disabilities are on waiting lists for home and community based LTSS. The wait can be as long as 8-10 years in some states. This crisis results in many negative effects: unnecessary, unwanted, and costly institutional care; the denial of the desires of people with IDD to live in and be a part of the community; family members being forced to quit jobs or take on second jobs to help care for their family member; or even having to leave their family member unattended.

Further information on waiting lists is available from KFF’s most recent survey of state Medicaid HCBS programs, including a discussion of why waiting lists are an incomplete measure of unmet need and why they are not necessarily comparable across states or over time.

In the 2023 survey, KFF asked states to report the number of people who were on “interest” lists for HCBS, as well as waiting lists, a difference from prior years. Key takeaways include:

·        The number of states that maintain waiting lists or interest lists for people who would like to receive HCBS has fluctuated little between 2016 and 2023.

·        In most years since 2016, there have been close to 0.7 million people on waiting lists or interest lists, with a total of over 692,000 in 2023.

·        Most people on waiting lists or interest lists have IDD and most live in states that do not screen any people for eligibility prior to adding them to waiting lists.

·        Most people on waiting lists or interest lists are eligible for personal care provided through states’ regular Medicaid programs or for services provided through specialized state plan HCBS benefits.

KFF also recently updated the waiting list indicators on State Health Facts to help people better understand who is on waiting lists and what those waiting lists mean.

What do we need to do to address the problem of transition age youth with IDD?

Very clearly, if behavioral healthcare is to become a good partner to the IDD field, we must develop the capacity to provide the types of community-based services that are required. This implies that we must be able to address our own staff and skill shortages. Initial steps are needed to improve salaries and working conditions for providers to encourage more people to enter these services. We also must address the structure and funding of services through Medicaid and HCBS. An initial step here will be to support the Biden Administration’s proposal to dramatically expand HCBS over the next decade. And finally, we must improve the quality of the data available on this population, its needs, its services, and its outcomes.

© 2024 RW Manderscheid