INTRODUCTION

The past decade has been a period of remarkable change for Ohio’s developmental disability system, as views continue to shift around how to best promote the integrity and independence of individuals served by the system. However, significant change is often accompanied by resistance and discord. Rifts remain among individuals served, family members, providers and disability advocates regarding how quickly change should occur, and to what degree. An increased emphasis on home and community-based services (HCBS) over institutions and sheltered workshops is a welcome change for those who view these settings as exploitative or overly restrictive. Fear does remain though among some stakeholders that an overemphasis on these settings, and abrupt shifts in policy and funding, may leave some without the level of service they need, or access to the options they desire.

In the following brief, we will provide an update on the most significant issues facing the system, as well as considerations moving forward. For additional background on the developmental disabilities system, read Ohio at a Crossroads: The Developmental Disabilities System.

Where are we now? An update on significant issues facing the Ohio Dept. of Developmental Disabilities Click To Tweet

KEY TAKEAWAYS

  • The Fix the List Initiative has proposed new rules designed to address problems with the Medicaid Waiver HCBS Waiting List. These changes, if approved, will likely lead to a shorter list, which more accurately reflects those currently in need of services. Critics argue the change may create challenges for families seeking to plan for the future, and may remove some individuals from the list unnecessarily or without the supports they need.
  • The state continues to move forward with its transition plan related to integrating HCBS. The Ohio Department of Developmental Disabilities’ (DODD) original submission to CMS acknowledged the department would not come into compliance by the established deadline of 2019 and suggested a 2024 timeframe. CMS, under the new administration, has now given all states an additional three years to come into compliance; DODD maintains it does not intend modify the submitted state plan
  • Approximately 29 percent of individuals with developmental disabilities receiving employment services are in integrated community-based settings. Recent actions at the national level, both related to subminimum wage and integration, could have implications related to employment in the years to come.
  • Disability Rights Ohio has recently been granted class-action status for a lawsuit filed in 2016, alleging the Governor and his administration have not sufficiently provided home and community-based options to those with disabilities across the state. The lawsuit is pending, and the outcome could have serious implications for the state.

WAITING LIST FOR MEDICAID HCBS WAIVERS

Over several decades, Ohio’s developmental disabilities service model had typically favored institutional care and sheltered work over home and community-based services. In part, this is the result of the funding structure for these services across the state. Medicaid, jointly funded by the federal government and states, is the primary payer for long-term supports and services for individuals with disabilities. For care that is received in institutional settings, the state’s portion is financed through state dollars. However, HCBS services, available through Medicaid waivers, often require this portion to be raised at the local level, where resources are scarcer, and vary significantly from county to county (for more details on this disparity, read the 2015 study, Ohio at a Crossroads). This dynamic has made it more challenging for counties to serve individuals in HCBS settings.

Additionally, an increasing number of individuals have chosen to move away from what they viewed as more restrictive services, towards services that allow them to experience full and active lives, remaining in their homes and communities. This shift has led to an increase in demand for waivers. The result has been a growing waiting list (the most current figure is 48,962) and robust debate over how to best solve this complex issue. [1]

In recognition of the severity of the issue, the state has committed millions in state dollars for new waivers over the past two budget cycles. This included funds to support 3,000 new waivers funded in the 2016-2017 budget, and approximately 750 additional waivers in 2018-2019. Many of these waivers are specifically aimed at reducing the waiting list, or to help individuals who want to leave institutions.[2] To date, most of these waivers have been assigned or allocated.

What is a home and community-based services waiver? Watch this brief video to learn more.

Questions have persisted among lawmakers and administrators, however, about the validity of the waiting list figure and the specific needs of those waiting. As waiting lists are managed locally, by County Boards of Developmental Disabilities, it has been difficult for the state to ascertain the unmet needs of individuals on the list, and to accurately determine how best to meet those needs. In fact, the administration has maintained that it is likely that many of the individuals on the list do not have current unmet needs, or have been added to the waiting list in anticipation of a future need, and may be better served through other mechanisms, rather than costly Medicaid waiver services (a point partially confirmed by a 2014 study of the waiting list by the Ohio Developmental Disabilities Council). Many outside of the administration, including county boards, have struggled to determine the most appropriate way to manage their waiting lists and distribute waivers in the most equitable way possible. Currently, each board implements its current wait list according to local planning priorities, which has led to inconsistencies across the state.

Therefore, in 2016, the Fix the List initiative began. Led by a coalition of stakeholders including DODD, The Arc of Ohio, The Ohio Association of County Boards of Developmental Disabilities, The Ohio Provider Resource Association, The Ohio Developmental Disabilities Council, and others, the program was set up with a goal to fix the “broken” waiting list system.[3]

Approximately 29 percent of individuals with developmental disabilities receiving employment services are in integrated community-based settings.

Their work was informed by a survey of consumers and family members, as well as the aforementioned waiting list study, and an analysis of the current waiting list process conducted by the National Association of Directors of Developmental Disabilities Services. The “solution” proposed by the coalition includes incorporating an assessment that will be administered to individuals seeking Medicaid waiver services, prior to adding a person to the waiting list. The assessment tool is designed to determine the individual’s eligibility for waiver services, and if there is an existing unmet need that cannot be supported by a “community-based” alternative service. [4] Those whose needs the county board determines could be met elsewhere will not be added to the list. In addition, immediate needs are to be addressed at the time they are identified, in an effort to ensure that individuals on the list are not without necessary services. The proposal also includes guidelines on how waivers will be distributed, which differ between local and state funded waivers. Whereas specific criteria are established in the rule for the order of enrollment for locally funded waivers, the state may determine the order of enrollment for state funded waivers, with no criteria offered. Also notable is the proposed transition from locally managed waiting lists to a web-based waiting list management system overseen by DODD. The rule change finished its period of public feedback and was reviewed by The Joint Committee on Agency Rule Review (JCARR) in mid-May. It was intended that the new rule go into effect on July 1, however DODD has delayed implementation to September, after concerns were expressed by county boards regarding what some viewed as a too-brief transition period. The rule includes guidelines on how individuals currently on the waiting list will be assessed to determine where they fit under the new guidance; those individuals with current unmet needs with no ability to access “alternative” services may remain on the list, while those with no immediate or current needs will be removed from the list.

Administration officials report that they have been happy with the process, in particular with its collaborative nature. It remains to be seen what the impact of this centralized system will mean at the county level. One likely outcome is a waiting list that more accurately reflects those with current needs; this may help to raise awareness among decision makers around the need for additional funding to support HCBS services, as skepticism about the list’s accuracy can be put to rest. In addition, the rule will help to assure that community “alternatives” are being accessed by those with needs when appropriate, through a systematic process. However, concerns remain that the addition of the assessment component may lead to some individuals being diverted away from the waiting list unnecessarily. The rule also guides counties to offer non-community based options (i.e. institutions) to individuals requesting waivers, which could unduly influence the individual and family’s desire to seek out community alternatives when faced with a long waiting list. Challenges during the transition period seem likely, as individuals who have been on the list for years may be removed if no current or immediate need can be identified, eliminating a safety net that some families found reassuring, and complicating their ability to plan for the future.

Overall, the Fix the List initiative represents a sincere effort by stakeholders within the developmental disabilities community to work together to tackle a complex issue.

Similar criticism was expressed by DRO’s Executive Director Michael Kirkman in a May 2 letter responding to the proposal. Kirkman wrote the proposed rule will not change “the lack of long-term planning to address the critical service needs of people with intellectual and developmental disabilities and their families.” Further, he suggested that it represents yet another Band-Aid to mask a larger issue related to insufficient waiver availability across the state and that the rule doesn’t adequately prioritize HCBS waivers to those living in institutions. The rule continues to overburden family members and other caregivers, who often lack necessary supports, is unfair to those who are on the list but may be assessed as having a current unmet need and establishes an unrealistic time frame, according to DRO. [5]

Overall, the Fix the List initiative represents a sincere effort by stakeholders within the developmental disabilities community to work together to tackle a complex issue. Ongoing monitoring, and continued diligence, will be necessary to assure that the new rule is effective to more efficiently distribute waivers to those in need. In addition, continued state funding for additional waivers helps to ease the pressure on local governments to fund community-based services, and is necessary to truly “fix the list.”

CMS TRANSITION

In 2014, as the state continued its gradual efforts to increase access to integrated and community-based settings, the Centers for Medicare and Medicaid Services (CMS) issued new rules related to the settings where Medicaid waiver services may be delivered. Specifically, the guidance called for these service settings to be integrated, meaning that they include both individuals with developmental disabilities as well as those without developmental disabilities, and that these settings be as minimally restrictive as possible. Under these new rules, most traditional “sheltered workshop” settings, as they are currently operated, would not meet the standards outlined by the CMS. Medicaid waiver homes with restrictive policies and strict schedules would also be out of compliance. States were required to submit plans describing the steps necessary to reach these requirements by the initial deadline of 2019.

Under these new rules, most traditional “sheltered workshop” settings, as they are currently operated, would not meet the standards outlined by the CMS.

Ohio acted promptly to develop its transition plan, which was approved in 2016. In recognition of the level of work that needed to be done to come into compliance, Ohio initially had sought 10 years to integrate waiver services, specifically sheltered workshops. While the decade extension was not granted, DODD explained that the transition plan was accepted with the understanding that the 2019 timeline was likely too aggressive for the state to meet, and that a more measured approach would be necessary given the complexity of the existing system.

Since that time, the state has been working to meet the steps outlined in the plan, and department officials have been pleased with those efforts to date, believing that they were on-track to meet their established goals.

After the first few months of the Trump presidency, however, CMS issued a letter extending the timeline for states to come into compliance with the 2014 rules, citing the “difficult and complex” nature of the transition work.[6] States now have until 2022 to come into compliance. This news was welcomed by many states, counties and provider groups who feared that the timeline was too aggressive. It no doubt quelled the fears for some family members and individuals, who had concerns about losing immediate access to their current providers.

Some saw this, however, as an unfortunate move by the administration to quell progress on an important civil rights issue. They expressed concern that it may indicate that CMS, under a new administration, may eventually abandon the new rules entirely, setting the country back decades in its treatment of individuals with disabilities. Moreover, others view the delay as aimed towards pleasing those with a business interest in maintaining the current service system.[7]

…29 percent of individuals with developmental disabilities who are engaged in employment services across the state are in integrated employment settings. This represents an increase of nearly 5 percent over the past two years.

In discussion with DODD, department officials emphasize that, at this point, there is no intention to submit modifications to the existing state plan (though this is allowed under law) and that the state plans to continue to follow the plan as written, which acknowledges full compliance is not expected by 2019.

EMPLOYMENT

In 2012, Ohio’s efforts to support integrated employment options began, via the Employment First initiative. Since that time, progress has been modest, and debate around the issue has been robust, with some advocates expressing dismay at what they perceive as insufficient efforts to shift away from sheltered workshop and other adult day settings. Others have voiced concern that an abrupt shift will lead to diminished options and gaps in services for those with severe disabilities.

According to the U.S. Department of Labor, integrated employment refers to “jobs held by people with disabilities in typical workplace settings where the majority of persons employed are not persons with disabilities, where they earn at least minimum wage and where they are paid directly by the employer. These individuals may be in jobs without dedicated support, in jobs in which they are supported to learn and perform tasks that are associated with a standard job description, or in jobs where tasks and conditions of work are customized to match the characteristics of the worker and the needs of the employer.”[8] According to data provided by DODD, 29 percent of individuals with developmental disabilities who are engaged in employment services across the state are in integrated employment settings. This represents an increase of nearly 5 percent over the past two years.

Integrated employment is a contrast to sheltered workshops, where individuals with disabilities work, typically piecemeal, earning subminimum wage, or adult day settings, which are largely social and activity-based, built around the needs of those with disabilities. The majority of individuals receiving day supports are in adult day or sheltered workshop settings. Participation in these services has not declined over time, and these remain the most utilized options across the state.

Ohio is not alone in facing this challenge. National data reflects that Ohio’s integrated employment rate is above average and many states have rates far lower. However, it should be noted that some states operate no sheltered workshops and invest significantly more in integrated employment efforts.[9] The adoption of innovative programs to transition sheltered workshops into integrated community spaces is growing across the country, providing a model for states like Ohio to follow.

Medicaid is the largest payer of day and employment services for individuals with disabilities

Medicaid is the largest payer of day and employment services for individuals with disabilities, and therefore the aforementioned rule changes have had significant implications in this area. These rule changes specifically target isolated settings like sheltered workshops, however, it remains unclear whether the rule change alone will lead to the closure of these types of settings. DODD maintains that if there is a demand for these services it is likely that they will remain as options in some form. Additional emphasis is being placed, however, on providing more community-based options, including a time-limit on facility-based services, an increased focused on career planning and skills building and stricter requirements around community-involvement. Career planning is now incorporated into all of DODD’s Medicaid waivers, as are additional supports for job training. It is yet to be seen how widely these services will be utilized, but all represent an important shift in state policy. Yet, the funding model in Ohio still favors segregated facility-based settings. While the state has increased rates for integrated employment and made other program modifications to enhance services in this area, funding to support community employment efforts remains insufficient. It is likely that a more significant investment may be necessary to achieve large-scale change.

Also of note, in January 2018, the Trump administration sought to minimize the Obama administration’s efforts to reduce the overemphasis on sheltered workshops, by withdrawing Department of Justice technical assistance documents which emphasized the responsibility of states (under Olmsted and the Americans with Disabilities Act (ADA)) to provide services to individuals’ integrated settings. While the administration downplayed its significance, a letter signed by dozens of disability rights advocacy groups and providers said they were “concerned that it sends the wrong signal to public entities and employment service providers about what is necessary to comply with the ADA’s integration mandate with respect to employment services. Indeed, some groups have incorrectly described the withdrawal as eliminating the applicability of the integration mandate to employment services. We are also concerned about whether the withdrawal of this guidance reflects a diminished concern by the Justice Department with ensuring that public entities provide employment services that allow people with disabilities to work in competitive integrated employment.”[10]

2,859 people in ICFs received counseling on options regarding waiver services.

Furthermore, while the issue of subminimum wage for individuals working within sheltered work settings has not been at the forefront of discussion in Ohio, it remains a significant concern among advocates, and some lawmakers. In April of this year, a group of lawmakers sent a letter to the U.S. Department of Labor requesting a phase out of rules that allow employers to pay individuals with disabilities less than minimum wage.[11] In addition, several recent court decisions have awarded back pay to individuals with disabilities who challenged their subminimum wages, including a case in Ohio.[12] Pressure is mounting for policy change related to this issue, though the pro-business agenda of the current administration may be at odds with such a shift.

In combination, these issues paint an uncertain future for employment services for individuals with disabilities. Continued diligence by advocates and stakeholders is necessary as federal directives may influence the progress made to date nationally. Assuring that Ohio’s committed to staying the course in pursuing integration, and continuing to monitor the need for additional resources, will be of key importance.

INTERMEDIATE CARE FACILITIES (ICFs)

Efforts to downsize large institutional facilities in Ohio predate the 2014 CMS rule change, and this work is ongoing. A portion of the state-funded waivers from the past two budget cycles have targeted individuals living in institutions who want to leave (labeled “exit” waivers) while others have targeted those who are seeking residential care but may be better served in a community-based setting (called “diversion” waivers). According to DODD, a large portion of these waivers have been allocated to date (824 exit waivers, and 86 diversion waivers).

In addition, DODD’s work to downsize large facilities and convert institutions to smaller community-based waiver homes continues, with the following data provided to reflect its progress.

 Number of beds accounted for in plans approved by the DepartmentActuals
“Downsizing” beds507265
“Conversion” beds 672504

Options counseling is another component of this work, as empowering individuals and family members to make informed choices about care options is essential. DODD has worked to enhance options counseling within the system. Interestingly, many who reside in ICFs are choosing to stay, rather than move into smaller, community-based options. The most recent “score card” released by DODD for the last quarter of the past fiscal year, indicates that 2,859 people in ICFs received counseling on options regarding waiver services; 689 or 27 percent, chose waiver services, while the remainder did not. DODD officials believe that this reflects that many currently in ICFs have complex needs, and feel that larger institutional care is most appropriate to meet those needs. They do concede though that continued training for staff on options counseling is a priority.

Disability Rights Ohio has repeatedly maintained that the continued high rates of individuals living in ICFs is a primary area of concern (and one cited in their lawsuit, described below). They point to data previously cited by DODD; “At least 2,500 Ohioans with developmental disabilities who currently live in large institutions want to move into their communities.”[13] Ongoing prioritization of this issue is essential, and close scrutiny must be paid to the options counseling occurring onsite at ICFs, to ensure all individuals are informed in their decision making.

CONFLICT OF INTEREST

Yet another pending change across the state relates to a “conflict of interest” that exists at the local board level. In many communities in Ohio, county Boards of Developmental Disabilities have historically been the primary providers of many services, while also providing the case management function of assessing individuals and facilitating referrals to meet needs. CMS has identified this as a “conflict of interest” and has found the state out of compliance with this requirement, and has told Ohio to separate the entity that provides the case management function to individuals with disabilities from the entity responsible for the provision of waiver services. For the past several years, DODD has been working with county boards, who must pivot from providing services directly, to identify private providers to fill these gaps. As the proportion of private services versus board services varies significantly across the state, this task is more burdensome in some areas than others. However, overall, remediation of this conflict is well underway. At the end of the past fiscal year, 30 percent of services were provided directly by county boards. To date in FY 2018, this percentage has decreased significantly to approximately 16 percent,[14] signifying that boards have been actively reducing their service offerings, and making room for private providers to step in.

PENDING LAWSUIT

In 2016, Disability Rights Ohio, on behalf of six individuals, filed a lawsuit against state officials claiming that Ohio has failed to comply with the Americans with Disabilities Act integration mandate, by segregating individuals receiving services, and not fully supporting individuals to live and work in their communities. Efforts have been made to dismiss the lawsuit outright, which have been denied, and to quash DRO’s efforts to make the lawsuit a class action suit. Class action status was granted in March 2018, in spite of severe opposition from many provider and family groups.[15] Most recently, in May 2018, the court defined the class to mean those people who have received options or preadmission counseling, said yes to community-based services and have not yet been provided with those services. This class definition is narrower than the definition originally advocated by DRO, which was intended to represent the interests of a broader group of individuals with developmental disabilities who desire HCBS services.

While DRO maintains that it has no intention to support large scale closure of segregated facilities, opponents of the lawsuit believe that DRO’s determination to integrate is not reflective of the desires of many individuals and families involved in the system across the state, and fear the lawsuit could result in aggressive changes that provide fewer options. DRO, through the lawsuit, is seeking to increase access to Medicaid waivers to support HCBS services. The lawsuit is pending in court.

OTHER

In addition to the many pressures and opportunities facing the system, DODD is engaged in multiple other initiatives, including rental assistance and technology growth, among others. Department staff are also seeking to better understand the holistic needs of individuals served within the system. As an example, they are currently analyzing medical claims data to identify trends or emerging issues related to healthcare in order to identify ways that the agency and other stakeholders can work proactively to support the health needs of individuals with developmental disabilities.

THE CHOICE NARRATIVE

Interestingly, both DODD and Disability Rights Ohio have emphasized that the “choice” of the individual is of primary importance, when describing their policy priorities. To DODD, it is imperative that choices are offered; they cannot dictate the decisions that individuals make, and believe that the provider “market” will ultimately respond to the needs and desires of individuals in the system. In short, if individuals choose to receive services in sheltered workshop settings, they will likely continue to operate. Family and provider groups that have vocally opposed the shift away from sheltered workshops and large institutions have articulated a similar position; that reducing options by closing facilities is not a way to promote choice.

Due to barriers, such as the lengthy waiver waiting list and insufficient efforts to integrate employment, individuals served by the system are not provided with sufficient options that they can easily access.

In contrast to the state’s position, DRO and like-minded advocates argue that no such choice is evident. They argue that due to barriers, such as the lengthy waiver waiting list and insufficient efforts to integrate employment, individuals served by the system are not provided with sufficient options that they can easily access. Options must be readily available, and funded appropriately, so that people can chose them. Many would argue that, within the existing system, much more work needs to be done before a true “choice” can be made.

The choice dilemma is complex, and at its core, ideological. “Choice architecture” has been a hotly contested issue in behavioral economics for years, with individuals such as Nobel Prize winner Richard Thaler reasoning that a “nudge” is often necessary for all people to make the best decision in their own best interest, while others argue that unrestricted freedom of choice is the ideal we should strive to meet. This issue is further complicated within a system with a dark history marred by paternalism and exploitation, where for many decades, no choices were available at all.

CONCLUSION

In closing, these divergent viewpoints aren’t likely to come together soon. In many ways, Ohio should be applauded for its rigorous efforts to respond to an ever-changing policy environment, and its efforts to include all stakeholders along the way. The “Fix the List” initiative is a great case in point. However, the pending lawsuit is a reminder that the progress made to date shouldn’t stall, regardless of actions that might occur at the federal level. Continued deliberate and well-planned advancement towards a more integrated service landscape is necessary, as is additional policy change to better align stated priorities with state funding.  

 

 

[1] Ohio Department of Developmental Disabilities

[2] Lusheck, Brie. “State Budget, As Enacted: Ohio Departments of Aging, Developmental Disabilities, & Job and Family Services,” The Center for Community Solutions.

https://www.communitysolutions.com/research/state-budget-as-enacted-ohio-departments-of-aging-developmental-disabilities-job-and-family-services/

[3] Fix the List, http://www.fixthelist.info/

[4] http://www.fixthelist.info/the-rule.html

[5] DRO comments on DODD’s proposal to reassess waiting lists, http://www.disabilityrightsohio.org/news/dro-comments-on-dodds-proposal-to-reassess-waiting-lists

[6] CMS Informational Bulletin https://www.medicaid.gov/federal-policy-guidance/downloads/cib050917.pdf

[7]CMS Gives States Until 2022 To Meet Medicaid Standards Of Car, Kaiser Health News, https://khn.org/news/cms-gives-states-until-2022-to-meet-medicaid-standards-on-home-and-community-based-care/

[8] U.S. Department of Labor, Integrated Employment Toolkit, https://www.dol.gov/odep/ietoolkit/index_video.htm

[9] The National Report on Employment Services and Outcomes, the Institute for Community Inclusion, https://www.statedata.info/sites/statedata.info/files/files/statedata_bluebook_2016.pdf

[10] Response to DOJ withdrawal, http://www.bazelon.org/wp-content/uploads/2018/01/DOJ-ADA-Withdrawal-Letter_1-5-18.pdf

[11] https://www.disabilityscoop.com/2018/04/27/senators-subminimum-accusations/25025/

[12] http://www.toledoblade.com/Courts/2016/02/04/Judge-Seneca-County-workshop-owes-back-pay.html

[13] Disability Rights Ohio http://www.disabilityrightsohio.org/dd-class-action-lawsuit

[14] Late billing may increase this percentage slightly over the final months of the fiscal year, per DODD.

[15] http://www.dispatch.com/news/20170608/families-fight-class-action-status-in-disability-rights-lawsuit