ACA, Medicaid and Unintended Consequences for People with Disabilities

People with disabilities who are eligible for healthcare through Medicaid may experience painful gaps in coverage during transitions. There are groups of people with disabilities that are particularly vulnerable: those who need long-term care services, those who apply but are not yet found eligible for SSI in 209b states with expanded Medicaid and youth transitioning to the adult system.

Long-term care services and supports, such as personal assistance services or durable medical equipment, are critically important to some people with disabilities. Medicaid packages for people with blindness and disabilities, or AABD or SSI Related Medicaid, offer comprehensive coverage, including long-term care supports and services. For those who need them, these services are a lifeline to independence, living in the community and employment.  Either not affordable or available through the private insurance market, Medicaid has been the sole access point for people with disabilities who need long-term care services. The Adult ACA Medicaid group, or expansion group, is a Medicaid program that may or may not provide an individual with long-term care services in any given state.

209(b) Expansion States Facing Challenges with Transitions 

One key difference across states is the option to automatically provide SSI Related Medicaid to recipients of the federally-administered state supplementary payments though the Supplemental Security Income (SSI) program. Ten states use at least one eligibility criterion that is more restrictive than the SSI program for Medicaid eligibility and are referred to as 209(b) states. This means that an individual in these states who applies and is found eligible for SSI must make a separate application for Medicaid coverage.

The following states are currently 209(b) states: Connecticut, Hawaii, Illinois, Minnesota, Missouri, New Hampshire, North Dakota, Ohio, Oklahoma and Virginia. All but Missouri, Oklahoma and Virginia have expanded Medicaid eligibility through the ACA.

Limited Access to Long-Term Care and Providers in the ACA Adult Group

Because many SSI applications take longer to process than Medicaid applications, people with disabilities can frequently be found eligible for ACA Adult Medicaid while waiting for SSI eligibility to be approved. While this group of individuals who have been approved as ACA Adult Medicaid eligible has access to healthcare, they may not have access to long-term care services.

Once SSI eligibility is approved, however, the beneficiary is no longer eligible for the category of Medicaid (ACA Adult) they are currently receiving. When they are put into the correct category for coverage (SSI Related Medicaid), they are sometimes dropped from one health plan and put into another without their knowledge. The end result is a current Medicaid beneficiary who is denied or faces delayed access to long-term care services he or she should be receiving under SSI Related Medicaid, as well as potentially losing access to providers and being forced to reapply altogether.

In addition to the lack of access to needed long-term care services, people may also experience challenges related to accessing medical service providers. In some states, the integration of the ACA and managed care has vastly changed provider infrastructure, with managed care plans for SSI Related Medicaid offering different provider networks and services than ACA Adult Medicaid managed care plans.

Many individuals, especially those new to SSI Related Medicaid, will not be aware that they are in a different category until another action is taken, such applying for a Medicaid waiver service, attempting to contact their managed care plan or going to see their providers. Both of these issues can result from the timing of an individual’s Medicaid application and approval.

Youth with Disabilities Facing Challenges with Transitions

Youth with disabilities can also potentially face significant unintended consequences around access to appropriate healthcare coverage. Children with disabilities are found eligible for SSI due to a reduction in both Activities of Daily Living and Instrumental Activities of Daily Living. This means a youth can be eligible for SSI under a broader context of criteria, like an inability to socialize or play with others.

Adult disability determinations, by contrast, are made based on a disabling condition that impacts employment—not only current employment, any employment in the country that may be available to someone with such impairments. These are vastly different criteria.

As a result, many children are found eligible and begin receiving childhood SSI and SSI Related Medicaid. However, when they turn 18, they are required to meet the adult disability guidelines in order to remain eligible. Many children fail to meet those adult requirements and their benefits are terminated. Of those that are found ineligible when they turn 18, a number are later found to be eligible in further review or appeal processes. Because Medicaid waiver programs are available only to individuals who are current Medicaid recipients, a child may have waited years to be eligible for Medicaid waivers, be found eligible, only later to be denied eligibility for adult disability—which results in losing benefits under SSI Related Medicaid and SSI eligibility. If, upon later application, the individual is once again found eligible for both adult SSI and SSI Related Medicaid, he or she must now go to the back of the waiting list for the same waiver services previously lost under a youth determination. This can result in years without necessary, critical services and care.

Experiences in the States

Health & Disability Advocates conducted a short, informal survey of seven 209(b) states that have expanded Medicaid to learn more about how states identify people who are in the “wrong” eligibility category and the processes states have in place to prevent this from happening. With six of the seven states responding to the survey, HDA found that:

• Three of six respondents offer Medicaid provider packages that are different depending on whether you are in SSI Related Medicaid or ACA Related Medicaid.

• Three of the six responding states offer some variety of waivers to individuals even if they are placed in ACA Related Medicaid.

• None of the responding states have a formal process for coordinating information about individuals who transition eligibility from one service package to another.

• Four of six states are unaware of whether individuals have been improperly placed in the wrong Medicaid eligibility package; the remaining 33% have implemented trainings, but know that individuals continue to get placed into the wrong eligibility group.

• Five states (all but North Dakota) were not aware of specific alerts that notify the Medicaid beneficiary that their eligibility for one program has ended and another started.

Upon further contact, roughly half of the states were in the early stages of identifying the issue of individuals being inappropriately placed and noted a need to develop a process for re-engaging the beneficiary to get them connected to appropriate providers for maximized health.

Recommendations Going Forward

While states are currently uncertain about the scope and breadth of these issues, it is important to identify individuals who have fallen through the cracks and may experience a significant disruption in services and eligibility. At a minimum, requiring states to create an automated notification system for changes to eligibility would provide beneficiaries greater clarity and time to plan.  In North Dakota, for example, individuals receive a notice as they leave eligibility under one Medicaid group and become eligible for another. Notice of and clear information about the ramifications of the change is critical.

Another recommendation for states is to look at integration of its systems and data tracking of disability populations. Data exchanges between the state and federal systems, along with the differing eligibility criteria among various programs, should make tracking persons with disabilities a high priority for states. Minnesota, for example, is developing a new integrated system with the capacity to match data sets to a broader context of information, such as employment status. This will greatly enhance the ability of the state to make sure that people with serious health needs receive the proper services and have access to the supports they need for the greatest possible independence.

Joe Entwisle, MS, CLCP
Sr. Policy Analyst
Health & Disability Advocates