Access to services for individuals with intellectual disabilities and autism (ID/A) is a pressing issue in Pennsylvania, with thousands of individuals and families facing long waits for critical support services. The most recently published public copy of the Office of Developmental Programs (ODP) 2022 Annual Waiting List Report, provides a comprehensive look at the current state of Home and Community-Based Services (HCBS) availability, as well as the challenges in service provision, and ongoing efforts to address these issues. In this article, you will find a comprehensive summary of the important details from the 2022 Annual Waiting List Report, as we patiently await a more updated version of this report to furnish changes reflecting the current status.
Understanding the Waiting List
The waiting list consists of individuals who have been deemed eligible for Home and Community Based Services (HCBS) waivers, but have not yet received them. The waivers include adult autism waiver (AAW), community living waiver (CLW), and others. The report outlines that these services may be delayed due to funding or capacity limitations, or lack of staff availability, among other reasons. The list is divided into three categories based on urgency of need. The following is the breakdown of the needs for those on the waiting list:
- Emergency Need: This includes individuals who require immediate services due to health or safety risks.
- Critical Need: This includes individuals who will need services within the next two years to maintain stability.
- Planning Need: This includes individuals who will need services beyond two years but are proactively identified for future support.
Key Statistics from the 2022 Report
1. Total Number of Individuals on the Waiting List
As of January 2022 (now 3 years ago), the waiting list included well over 12,000 individuals who require services but are yet to receive them. This number represents a continued challenge in ensuring timely access to support for the ID/A population in Pennsylvania. These numbers are likely much higher today, as the report showed a 7.4% increase in emergency cases from 2021 to 2022, though the information has not yet been made public.
Simple Deductions to catch up to 2025
To make a conservative deduction based on the 2022 report, if we add a 7.4% increase to each of the 3 years since this report was published in 2022, it is likely that there are at least 6,704 individuals today who are in an emergency status of need. Within this emergency category of the urgency of needs assessment, was a 19.5% increase from 2021 to 2022 for support to prevent immediate residential support needs. Also, there was a 10.3% increase in individuals who have only a single caretaker and need immediate support from 2021 to 2022. Likely today, these two categories would be approximately 1,778 individuals in need of emergency services for prevention of residential supports, and 1,692 individuals in need of emergency services due to a lack of caretakers.
2. Breakdown by Need Level
Based on the ODP 2022 Annual Waiting List Report, the prioritization of needs breaks down the number of individuals waiting as:
- Emergency Need: Over 5,000 individuals
- Critical Need: Over 3,500 individuals
- Planning Need: Over 3,500 individuals
The high number of individuals in the Emergency Need category underscored the urgency of expanding service capacity to meet immediate health and safety risks throughout Pennsylvania, though, once again, these numbers are likely to have increased in the 3 years since this report was published.
3. Time Spent on the Waiting List
One of the hardest situations Pennsylvania officials and caretakers as well as professionals face, is the time spent on a waiting list for services. The ODP 2022 Annual Waiting List Report highlights the length of time and the average wait times for individuals and their families for 2022, which may be more or less now.
- Many individuals remained on the waiting list for several years, with some waiting for more than a decade.
- The average wait time for services continues to increase due to funding shortages and workforce challenges.
In conversations with families in Pennsylvania who are receiving some of the services their loved ones are approved for, many of the individuals who do receive services face regular challenges with consistency and reliability of staff as well. So beyond the length of their waiting list period, challenges of staff reliability, consistency and availability, continue to cause barriers to adequately supporting the individuals in need of services.
4. Demographic Insights
When this report was published in 2022, the majority of the individuals in need of support, were spread throughout multiple counties, with Philadelphia, Allegheny, Montgomery, Erie, and Chester counties showing the highest number of individuals in need. Some other demographic data from 2022, includes:
- Age Distribution: A significant portion of those on the waiting list are children and young adults, highlighting a need back then for further early intervention services. This portion could have increased or decreased as of 2025.
- Regional Disparities: Rural areas tend to have longer wait times due to a shortage of service providers. In addition, the larger need resides in the larger counties, making it challenging to contract workers to support individuals far from larger, more populated areas.
- Racial and Socioeconomic Factors: Individuals from historically underserved communities often face greater barriers to accessing services.
- In 2022, the Southeast region seemed to boast the highest level of individuals in need.
Challenges Identified in the Report
- Workforce Shortages: A lack of direct support professionals (DSPs) continues to be a major hurdle in service provision, both in 2022 and today. High turnover rates and low wages with copious amounts of travel required, make it difficult to maintain a stable workforce to supply support to individuals in need.
- Funding Limitations: The demand for services exceeds available funding, leading to delayed enrollments and prolonged wait times. The report does not specifically mention the issues with sustainability of the funding, though it is clear to summarize that the demand for services, cost of services, and the increasing costs of living, are making the sustainability of services rather unfathomable.
- Service Capacity Constraints: Providers struggle to meet the increasing demand, especially in rural and under-resourced communities.
- Aging Caregivers: Many individuals on the waiting list rely on aging parents for support, heightening the urgency for long-term service planning. Further, many of the long term service planning is hindered by a lack of openings in group homes, lifesharing programs and/or a lack of independent ability to live alone.
Efforts to Address the Waiting List Crisis
Pennsylvania has implemented several initiatives to tackle the waiting list backlog for various waiver services, including:
- Increased State and Federal Funding: Additional financial resources were sought in 2022 and were allocated to expand waiver slots and enhance service availability.
- Workforce Development Programs: Efforts to recruit and retain DSPs through higher wages, training programs, and career pathways were ongoing in 2022. On a side note, the current climate of 2025 highlights that not much has been done to increase wages to meet the rate of growth in living expenses.
- Expansion of Community-Based Services: More inclusive, locally available programs are being developed to provide services closer to home.
- Enhanced Family Support Programs: Recognizing the role of caregivers, Pennsylvania has increased resources for family training, respite care, and peer support networks.
The Road Ahead
While the state has made strides in addressing the waiting list crisis from 2022, significant challenges remain even in 2025. Advocates continue to push for:
- Legislative action to increase funding and waiver slots, though little is known about where these funds would come from.
- Greater transparency in how services are allocated.
- Innovative solutions, such as technology-driven support models and flexible service delivery methods, much like INDEPENDIO.
Final Thoughts
The 2022 ODP Waiting List Report serves as a critical reminder of the gaps in service availability for individuals with ID/A in Pennsylvania. Though the report is 3 years old, there is likely worse news on the state of the discussed issues as of 2025. With thousands back then that were still awaiting essential support, continued investment, policy changes, and advocacy efforts necessary to ensure that every individual receives the services they need to live independently and with dignity, there is no question that this remains true today.
For families still navigating the waiting list today, staying informed and engaging with advocacy groups can help push for systemic change. In addition, pushing for the funding to develop projects like INDEPENDIO, a technology-driven intervention for skill building, could help drastically. If you or a loved one is affected by the waiting list, consider reaching out to local disability organizations, legislators, and ODP representatives to stay updated on available resources and policy developments. Do not give up on getting the services and support your loved on needs to thrive, and INDEPENDIO will continue to work at efforts to develop a program that will support those on the waiting list faster and more effectively than ever before.
