Prepared with support from The Cleveland Foundation
Authors: Rose Frech, Fellow, Applied Research; Jon Honeck, Ph.D, Director of Public Policy and Advocacy; Kate Warren, Graduate Assistant, Cleveland State University, Maxine Goodman Levin College of Urban Affairs
For the full report, including more on the Governor’s budget, a complete set of recommendations, and much more information on the DD system in Ohio, click here.
Ohio’s system of services for individuals with developmental disabilities is facing transformational change. The state relies heavily on institutional care and sheltered workshops for individuals with developmental disabilities, which many advocates argue are isolating, restrictive, and don’t promote independence. The system will undergo profound change in the coming years, and additional measures are needed to strengthen its ability to adapt to change. This study explains the developmental disabilities system in Ohio, and analyzes these recent important changes, including the impact of new federal Medicaid rules and changes proposed in the governor’s budget. We outline a series of recommendations at the close of the report that will help the system to increase access to integrated, community-based services and fully realize the rights of individuals with developmental disabilities. Recommendations include:
- Improve the availability of Medicaid waiver services & identify a plan to eliminate the waiting list
- Examine funding inequity among counties and improve funding for the tax-equity line item in the state budget
- Enhance funding for community employment supports and streamline access to services
- Accelerate ICF downsizing and conversion
- Address wage issues of the direct care workforce, and monitor employee turnover and provider quality
- Develop additional housing supports which are necessary to fully support community integration
An Overview of the Developmental Disabilities System in Ohio
The Ohio Department of Developmental Disabilities (DODD) provides general oversight to the state’s system of supports and services for individuals with developmental disabilities. Locally, County Boards of DD are responsible for facilitating these services. County Boards serve nearly 90,000 individuals each year; about half are adults. While historically service provision has favored institutional settings, the pendulum has swung toward a preference for community-based services and independent living, which decrease isolation and increase integration for individuals with developmental disabilities. Finding the proper balance is an ongoing discussion across the state and country.
ICFs and Developmental Centers
A range of services and supports are available for individuals with developmental disabilities, including various residential options. Intermediate Care Facilities (ICFs) include both privately operated facilities, Board-operated facilities, and 10 state-run Developmental Centers (DCs). In 2014, these residential options accounted for about 6,700 beds. The size of these facilities varies; while many are smaller and more “home-like,” others are large and deemed by many to be “institution-like.” In total in 2014, almost 3,000 individuals lived in facilities with more than 16 beds, while only 529 were living in six-bed or smaller facilities.
Residents, by size of Private ICF, 2014
The advocacy group Disability Rights Ohio recently called into question the state’s heavy reliance on ICFs, which many believe promote segregation, impede the rights of those with developmental disabilities, and may violate federal law. 2,500 individuals currently living in ICFs are on waiting lists to leave and receive services in the community. The state is currently working to convert ICF beds to Medicaid Waivers, which allow individuals to waive their right to institutional care in favor of receiving services in a home-or community-based setting. Relatedly, efforts are underway to decrease the size of large-bed facilities. To date, these efforts have been slow. And, because the state pays the nonfederal Medicaid match for ICFs, Boards may have a financial incentive to direct individuals into ICFs rather than onto Waivers, where county Boards are responsible for the nonfederal Medicaid match.
ICF and Developmental Center Location & Size
Waiver programs include services such as non-medical transportation, employment and day services, nutrition assistance, respite for caregivers, certain therapies, accessibility modifications, and personal care assistance. These services allow individuals to live in the community. Ohio currently has four DD waiver programs that serve people with different types and levels of need, including the Individual Options (IO) Waiver, the SELF (Self Empowered Life Funding) Waiver, Transitions (TDD) Waiver, and the Level One Waiver. As of February, 2015, over 35,000 people were receiving services through DD waivers across the state. Since 2002, Waiver growth has quadrupled. DD waiver reimbursement in Ohio totaled approximately $1.5 billion in 2014.
Estimated percentage of individuals with developmental disabilities receiving waivers, February 2015
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Click on the county for a pop-up with estimated percentage of individuals with developmental disabilities in ICFs, number of ICF residents & waivers per county by type
As of October, 2014, there were over 45,000 people on the waiver waiting list across the state. The median wait time is about 6.4 years. A 2014 study suggests that approximately 22,000 individuals on waiting lists had current unmet needs for services. The number of individuals on waiting lists varies significantly by county, but overall, DODD reports that the statewide list grows by 100 to 200 individuals each month. Several counties only remove individuals from the waiting list on an emergency basis or as other individuals with waivers no longer require these services, due to death or relocation.
Many factors contribute to long waiver waiting lists, including a lack of adequate local funds to make the match. However, data demonstrate that funding alone does not determine waiver accessibility. County Boards may elect to divert available funds to other programming. Given the many restrictions and requirements tied to waiver services, counties may be reluctant to expand their Waiver programs for fear of losing local control. The IO Waiver, the most frequently utilized waiver, has no monetary cap, and boards may be cautious to offer new waivers without knowing what their contribution will be in future years.
Day and Employment Services
Ohio’s developmental disability system also includes services that offer support for social and employment needs. Medicaid is the primary payer for most day and employment supports, though County Boards often heavily supplement this funding. Adult day programs engage individuals, teach life skills, help with social interaction, and provide opportunities for community integration. Adult programs may also be vocational in nature, including facility-based sheltered workshops. Another more independent and integrated option is community employment, with support services such as job coaching or aides as needed.
Many advocates argue that sheltered workshops and adult day programs segregate individuals with developmental disabilities from the community, do not provide adequate employment training, and often pay less than a minimum wage. Others praise the benefits of sheltered work, maintaining that many individuals with developmental disabilities cannot fully adjust to community employment, and will face harassment or bullying, and that local communities are not ready and willing to accept integrated employment.
Ohio’s Employment First Initiative emphasizes the importance of integrated employment for all persons with developmental disabilities and consequently is working to design a funding system to shift resources to accommodate that vision. However, since its inception, Employment First has not led to significant change in the employment landscape throughout the state.
Employment and Day Services, 2012-2014
Note: Unduplicated count (individuals could receive services from more than one category)
Ohio’s funding structure is unique in that a large percent of its funding for services for persons with developmental disabilities comes from local revenue streams, primarily property tax levies. Due to this reliance on local money, discrepancies in funding across the state are vast. On average, Boards spend about $14,500 per individual served, ranging widely from less than $5,000 in several Ohio counties to over $20,000 in many others. In some cases, this means that Ohioans with developmental disabilities can't access equitable services. However, increased funding doesn't always lead to increased access to community-based services. Counties may elect to spend money on less-integrated services.
Annual Spending Per Person Served by County, 2012
CMS Rule Change
Ohio is preparing to implement changes to Medicaid rules that have narrowed the types of settings in which Medicaid reimbursable services can take place, with a greater emphasis on integrated, community-based settings and outcomes. This will have a significant impact on services.
- Sheltered work and day services, as they have traditionally been delivered in Ohio, will no longer meet the requirements outlined in the new rules, as these settings largely isolate individuals and don’t allow for full access to the community.
- The CMS rule calls for “conflict-free” case management. Boards directly employ Service and Support Administrators who complete eligibility determinations, develop service plans, and connect people to recommended services. In addition to this case management service, many County Boards also provide services directly to individuals, including Medicaid waiver home-and community-based services. According to CMS, there is an inherent conflict of interest in this structure.
States will have as many as five years to come into full compliance on the new rule; Ohio is requesting 10 years for certain provisions, including those described above. Transition plans were submitted to CMS in mid-March, 2015.
The Governor’s Budget
In February, 2015, Governor John Kasich announced his 2016-2017 biennial budget, which requires approval by the Ohio legislature. The Budget included substantial investments in developmental disability services: $112 million above 2015 levels over the course of the two years. DODD has announced that, if approved, spending would target ICF downsizing efforts, increased funding for community employment, and most notably, the addition of 3,000 HCBS Waivers.
Key Recommendations for System Change
As a result of our research, we recommend the following changes to improve the Ohio developmental disabilities system.
- Develop a long-term solution to the state’s complex Waiver problem. The current system is not sustainable. This should include examining options to increase the financial capacity of counties and additional state-funded waivers.
- Increase funding for Employment First. Improve the partnership with Opportunities for Ohioans with Disabilities (OOD) and streamline access to employment services.
- Implement changes to accelerate ICF downsizing and conversion, including decreasing rates for beds serving those with lesser levels of acuity.
- Add additional housing supports to fully support community integration.
- Undertake an examination of the SELF Waiver to remediate barriers to use.
- Assess waiting lists to identify who has the greatest levels of unmet need and assure that these individuals are targeted for enrollment in the most appropriate Waiver.
- Increase collaboration among Boards to lead to cost savings and increased efficiency.