As discussed in our “Martyrdom Is Not Sexy” post, one of the most important and life changing events for people and families with disabilities is getting help at home. Over the next few weeks we will talk about different types of in home support, both natural and structured. Our focus here is on what seems to be the best kept government secret, and hardest to obtain, service for people with disabilities…home and community based supports (HCBS) through something called Medicaid-waivers. Over the years I have met many people who could benefit from these services, but they had never been made aware of them. One of the main reasons I got into disability advocacy was to learn the system so that my children’s quality of life would not be minimized by my limited knowledge of what was available for them.
In order to receive federal Medicaid funds, the federal government requires states to provide an “entitlement” level of support to people who meet certain disability criteria. States are allowed to determine how they choose to meet that entitlement requirement, which can vary significantly from state-to-state. Many, including Texas, make ICF/IDD (intermediate care facilities for people with intellectual and developmental disabilities) institutions available as their entitlement option. These ICF/IDDs can range in size from 6 bed homes in a traditional community to large congregate care institutions which house hundreds of people. Up until the 1970s, these large institutions were often the only option available to people with intellectual disabilities, and often physical disabilities as well, as there were no community-based support programs which enabled people to live in a traditional home environment. The costs associated with these institutions was paid by Medicaid, with the federal government picking up roughly 80% of the total cost of care and maintenance.
A former boss of mine once told me something which has stuck all these years: Power comes from having options. Many people believe money yields power, but when you think about it, all money does is enable the holder to have more options. During the 1950s and 1960s, many people with disabilities and their families fought against the belief that institutions…the only option at the time…was “best for the person”. They fought for more options, specifically the right to live where they chose. Creating advocate organizations to help advance their cause, these self advocates were successful in getting the federal government to create what are called “1915(c) waivers” which allowed the states to use Medicaid funds to provide community-based supports. They are called “waivers” because certain Medicaid requirements and restrictions do not apply to these programs, and in some cases, services and supports not traditionally covered by Medicaid are covered in these programs. Also, for many of these programs, the income of the family is not included when determining the Medicaid income eligibility for a minor with disabilities.
It’s important to remember that these programs are not “entitlements”, which means the states can limit access by allocating a specific number of “slots” in their state budget for these programs. Historically, demand for these services far outstrips the supply of slots that state legislators make available, thus waiting lists, or “interest lists”, are created. Sometimes these waiting lists can last for decades. When we found out about the Medicaid-waiver waiting lists in Texas, we immediately put our twins on three of them…MDCP, CLASS, and HCS. Our twins rose to the top of the MDCP waiting list after about three years, which enabled them to receive a wide variety of services. Meanwhile, it took them 10 1/2 years to reach the top of the CLASS list. This link leads to descriptions of the various programs in Texas, including a comparison table of services included in each. https://www.dads.state.tx.us/providers/waiver_comparisons/ Though people can receive services from only one Medicaid waiver at a time, they can be on multiple waiting lists at the same time. Once reaching the top of a particular waiver’s waiting list and receiving services, people usually remain on the other waiver lists in order to keep their options open once they reach the top.
While our twins were receiving services through the MDCP waiver, and were still years away on reaching the top of the CLASS and HCS waivers, we found ourselves in an unconscionable bind. The state of Texas tightened up the eligibility for MDCP and determined that our twins did not meet the medical necessity required for that waiver. Carole received a call on a Friday morning in March from the state agency stating that the twins’ services would stop at the end of June. As she was dealing with her mother’s health issues at the time, she asked me to handle it. After getting off the phone with Carole, I made a couple of phone calls to agency contacts in Plano and Austin, sharing a simple thought: “I completely understand this decision. What you need to know is that on the day following our twins’ last day of service, unless there are alternative supports in place, we are going to drive our girls and their luggage to the (state institution) and admit them as new residents. What do you propose?” Our system has no mechanism for planning and the state is not equipped to help with any forward thinking. It does, however, come together when presented with a crisis, and the imminent institutionalization of two minors constituted a crisis. To handle situations like this, Texas maintains a reserve set of slots for the HCS program, called “diversion slots”, which are intended to divert people at imminent risk away from the institutions. By mid-afternoon on that same Friday, I received a call back advising me that two diversion slots would be available for our twins when their MDCP services expired.
As with most things involving the government and people with disabilities, the Medicaid waiver programs are fraught with frustrations. While it can take years to reach the top of Medicaid waiver waiting list and receive services, those services are only good in the state of residence. What this means is that people and families receiving Medicaid waiver support can become handcuffed to that particular state, as their services do not cross state lines. People must decide which is more important, moving to another state for an important reason like a job transfer, or limit their life options to their current state out of fear of losing their support services. Military families feel this pain often, as reassignments can make it impossible for them to live in one state long enough to reach the top of that state’s waiting list. If they do reach the top, they run the risk of losing services when required to take a new assignment. This is particularly ridiculous as 60% of the waiver costs are funded by the federal government, so at the very least 60% of those funds should be able to follow the person. This link describes the Medicaid waiver services, and associated waiting lists, in each state: http://medicaidwaiver.org/index.html
Please let us know if you want more information on the Medicaid waiver programs, along with strategies on determining which are best for you.