Adults with IDD used less services because they could not access them, not because they did not need them. And the gaps in services will only increase because of changes in the population.
The budget proposal approved by the House on June 5th included a $168M cut in waiver-funded programs for adults with IDD in the budget originally proposed by Governor Shapiro in March 2023. Such cuts are remarkable given the overwhelming evidence of unmet needs amongst current users that is accelerating the collapse of the system of services. While officials from the Department of Human Services (DHS) have confirmed that the $168M cut in the budget proposal of the House is due entirely to underutilization this past year (e.g., adults with IDD and those responsible for their care spent less than expected on services), they refuse to discuss the possibility that their own policies created barriers to accessing services. As explained elsewhere, these barriers prevented adults with IDD from using $234M in funds that lawmakers allocated last year to help them. Almost a quarter billion left on the table is very tempting to lawmakers eager to find funds to support other initiatives.
We understand that there are other potential scenarios that could explain underutilization, scenarios that lawmakers might grapple with when wrestling with a budget proposal. In this post, we evaluate each of these other scenarios. It turns out that assessing current service needs and projecting future ones is not easy. Our conclusion? The amount spent on services last year was less than expected because adults with IDD could not access the services they needed, services that the state agreed were appropriate, but that the state has failed to ensure are available. The amount spent on services last year did not decrease because there were fewer services needed or fewer adults needing services. In fact, the number of adults needing services, and the amount and cost of the services they will need, are all likely to grow. So advocates are rightly concerned that these cuts will sustain if not increase the gaps in services that adults with IDD desperately need.
1. Underutilization cannot be explained by a decrease in the number of adults needing waivers: The evidence indicates that the number will continue to increase, especially this coming year. The evidence: the state's most recent report tracking the number of adults with IDD served and those needing services. With a 16% increase in the number of adults served through waivers over the past 6 years, the overall number of adults needing services will only increase. 800-900 young adults with IDD who leave public school each year require waivers, and that number is likely to rise in the future.
How does DHS accommodate this annual influx? DHS has committed to offering an entry-level waiver - the Person/Family-Directed Supports or PFDS waiver - to every adult aging into the system who clearly will need additional support. This year's projected influx is accommodated in the Governor's proposed budget by funding 850 new and more costly waiver slots (i.e., 100 Consolidated and 750 Community Living Waivers) at a cost of $17.5M. These 850 adults whose support needs are too intense and complex to be met by the less costly PFDS waiver will be shifted into these new Consolidated and Community Living Waiver slots: the 850 PFDS waiver slots freed up will be used immediately by those aging into the waiver system this year.
And we can expect an surge this year in the number of adults beginning to use waivers, a surge that DHS has not built into their projections. This surge is the 21 year-olds with IDD who, in June 2022, chose to continue their public school for a year - the result of our successful aFix66 campaign last year. We would expect that 21 year-olds most likely to need waivers are also likely to have elected the extra year of public school. So at the end of the current school year in August, the graduates eligible for waivers in August 2022 and in August 2023 will begin to seek services. Nonetheless, DHS' budget projections assume that the number nd total cost of PFDS waivers will not increase in the coming year.
2. Underutilization cannot be explained by a decrease in the number of services needed by adults with IDD or their caregivers: The evidence indicates that many have unmet needs. First, more than 4000 adults are classified as having an immediate ("emergency") unmet need for more intense and complex (and costly) services. DHS has worked heroically to decrease that number from more than 10,000 a decade ago, and the creation of the 850 new Consolidated and Community Waiver slots for adults with more intense and complex service needs is part of that effort.
Second, news reports across Pennsylvania reference long waiting lists for services. These reports align with surveys completed by providers reporting that many have curtailed services if not closed altogether. By May 2021, this had resulted in a 24% drop in overall service capacity. Given increasing regulatory barriers and ongoing challenges recruiting DSPs. we doubt that much of this capacity has been restored.
3. Underutilization cannot be explained by a decrease in the intensity and complexity of support needed by adults with IDD or their caregivers: The evidence indicates that the services needed are becoming more intense and complex over time as these adults and their caregivers age. We do not know of any research indicating that the needs of an individual adult with IDD decrease over time. We do know that their parents will need more support as they begin to age. This may eventually include placement outside of the family home when the parents are too old to care for their adult child.
This is evident in the ever-increasing number of Consolidated Waiver slots, the only ones capable of accommodating the cost of a private residential placement. These slots have no spending caps (the average annual cost per slot in 2022 was more than $210K), and so are used as a very last resort by DHS. Nonetheless, DHS has been compelled to create 950 additional slots over the past 6 years, and even this has not led to an decrease in the number of individuals considered to have an emergency level of need. Thus, the intensity and complexity of the supports that the population of adults with IDD will need WILL continue to increase as they age.
This also does not include younger parents whose children have more complex and intense support needs: some of these might be barely hanging on. For some, COVID was the last straw: in the year prior to COVID, the number of adults with emergency need decreased by 23%: the year after COVID, it increased by 28%. For these parents, other life stressors (like the death of or divorce from a spouse who shared caregiving responsibilities) can easily tip the scales in the most difficult decision of their life: giving up the day-to-day care of their child .
4. Underutilization cannot be explained by a decrease in the cost of services needed by adults with IDD or their caregivers: The evidence clearly indicates that the cost of services must eventually rise. The evidence here comes from DHS's own data compiled to support the Governor's budget presentation . The average cost of supports for the 3 different waivers has increased significantly since the onset of COVID. Combined with the increase on the number of persons served, this resulted in a $1.3B increase in the total cost of waiver funded services. With federal Medicaid dollars covering about 52% of the total cost, the state share was over $600M, about 1.4% of the entire state budget. We will dive into the details about how these costs might impact overall budget planning in a separate post.