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Updated: The Choice of Self-Direction for People with Disabilities – A Big Step Forward, If Done Correctly

The disability rights movement  has long sought equal rights and opportunities, in areas such as transportation, education, and accommodations for people with physical or intellectual disabilities. The landmark 1999 US Supreme Court decision, Olmstead v. L.C., established that publicly funded programs must grant people with disabilities the choice to live in community-based settings, instead of institutions. For people with disabilities who rely on Medicaid to pay for assistance with the activities of daily living, one way to live independently is through the “self-direction option” available currently in MyCare Ohio and some Medicaid Waivers.   This includes serving as the employer of their home health aides (often with assistance from a third party to do payroll, taxes, and paperwork). With self-direction, the consumer is more in charge of their life, a key part of independent living.

Ohio has been slow to adopt real self-direction for people on Medicaid, (although many have been able to choose Independent Providers), but change is coming for all people receiving home care.

People self-directing their care often prefer to hire their own personal care assistants. Recent proposed changes in how Medicaid pays these Independent Providers  of home care catapulted the issue of self-direction to the forefront of Ohio’s budget and policy conversation. To recap, the Governor’s budget – House Bill 64, as introduced – proposed to eliminate payment of claims from Independent Providers (IPs), without adequately communicating the reason for the change (compliance with federal laws) or the alternative for retaining the choice of IPs. An uproar ensued from consumers and family members (and their IPs) who thought they would lose the right to hire IPs.  

Ohio Consumer Voice for Integrated Care (OCVIC), coordinated by UHCAN Ohio, has advocated strongly with the Kasich administration and other advocates to resolve the issue by offering consumers the option to self-direct and to do so through an open and transparent process with strong consumer representation. The Governor’s Office of Health Transformation (OHT) has stated its intention to expand “Self-Direction” by including that option in all Medicaid Waivers. OHT has convened a workgroup of stakeholders to help with the expansion of self-direction, with a key goal being to make it ‘do-able’ by consumers who choose it. The next step is for OHT to prevail upon the Senate to add its language to their version of HB 64. [Update: The Senate declined to add OHT’s language to the budget, so the workgroup, timetable, and guidelines for creating a self-direction option for all Ohioans is NOT in statute].

OHT’s amendment to HB 64 addresses most, but not all, stakeholder concerns. OCVIC is currently reviewing successful self-direction models in use in other states and will be sharing its findings with Ohio Medicaid officials and the workgroup. While the workgroup can make recommendations, OHT has the final say on the model(s) and funding. Thus, no guarantee exists that consumers will get the hours of care they need, that IPs will be paid a decent wage, or that self-direction will be affordable to consumers (given administrative costs). With existing federal law and pending implementation that require IPs to be paid as employees – with overtime, reimbursement for travel, and other protections – consumers and IPs face additional uncertainty about future pay and hours for IPs.

If OHT’s amendment becomes law and a workgroup is created to create a program on self-direction, advocates will have to remain well organized to make sure Ohio’s move to self-direction works for consumers and IPs. [Update: Since the amendment was not added, advocates for people with disabilities will have to gain a commitment from OHT to conduct a process with robust input from consumers and advocates.] In the meantime, MyCare Ohio, the integrated program for Ohio’s Medicare/Medicaid beneficiaries, has an existing requirement that all consumers have a choice of self-direction. But the choice is not real right now, because consumers requesting self-direction have found that plans do not have a smooth process or system in place. The MyCare plans have agreed to work with OCVIC – and allied stakeholders – to design a consumer-friendly self-direction program for MyCare that could become the model for all Ohio self-direction.

Working with Ohio and national experts, OCVIC hopes to make self-direction a genuine choice for all Ohioans in home care wanting to live independently.

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