The stakes are high, the services low, and the management complex
When my sons turned 18, we joked about the fact they could buy cigarettes, guns, and porn. They could also vote and be charged as an adult if they messed up.
Now that my daughter, Miranda, is turning 18, it doesn’t seem funny anymore. It’s scary as heck.
Miranda has an intellectual disability, which means she is eligible for support and services through several government programs. She is eligible for Medicaid health insurance, Medicaid waivers for direct services (some states fund directly and not through waivers, as in our state), Social Security Income (SSI), and employment training and support through the Department of Vocational Rehabilitation (DVR).
Sounds like good support, but the reality is that they are eligibility-based programs (meaning she can gain or lose services at any time). Managing the systems takes an enormous amount of work, and we Solo Moms get to add the title of case manager to our roles. The systems have very little interaction with one another, which adds to the workload. They often are not very efficient, and simple mistakes can cost us the loss of services, our kid’s income, and support for our adult child’s future.
The stakes are high, the services low, and the management complex. Welcome to turning 18!
Young adults with mild to moderate disabilities can access some of these services. The most useful is usually DVR, through which your child can get a job coach to help him or her find a job.
As with most transitions, the more prepared we are, the better. Here are the systems and a basic timeline for transitions. The information here varies by state, though many of these are federal programs.
While your child is still 17:
1. Get your child a state ID. Many Department of Motor Vehicles (DMV) offices have online appointments. Prepare your child—the DMV will insist that hats and glasses come off and hair is not in front of one’s shoulders.
2. Apply for services from your Community Centered Board. This is a local agency that runs the Medicaid programs for children and adults with intellectual or developmental disabilities (I/DD). The usual requirement is an IQ (or functioning as if having an IQ) below 70. Make sure you are on any list the agency has for adult Medicaid services or waivers. The two programs for adults with I/DD are Supported Living Services or Developmental Disabilities Services. Both of these are also long-term disability programs and include health insurance through Medicaid. Some states do have very long waiting lists, so get on the list as early as you can.
3. Work with the school to ensure that your child’s individualized education program, particularly his or her postsecondary transition goals, make sense and are appropriate. Most of our youth with significant support needs will receive transition services through the school district until age 21. (Again, this varies by state.)
When your child turns 18:
1. Apply for SSI. Apply the month after your child’s birthday. Your child needs to be “head of household” so that only his or her income (and we are assuming it is none) is counted. Right now, adults who qualify are receiving a maximum of $731 per month. Part of that is their rent, which you must say you are charging them at a competitive rate for your area.
2. Schedule a Support Intensity Scale (SIS) interview. The SIS determines the level of Medicaid funding your adult child will receive for services. (This is not income.) Prepare for this very important assessment by downloading the questionnaire from your state. You have to describe your child on his or her worst day ever, so think twice before including your child in this interview. It can be unpleasant and a bit depressing.
3. After the SIS interview, you will develop an individual plan regarding how to use the Medicaid funding. This can include vocational training, therapies, respite programs, personal care, and much more. You can change your plan throughout the year and have some options on who provides the services. For many adults, it does not cover a full day, so they will have lots more downtime.
4. Apply with the DVR. The agency works with anyone who has a disability and needs help in acquiring a job.
These programs are not intended to help create a meaningful, engaged, community-based life. SSI is to prevent homelessness, so it’s very little money along with disincentives to get a job (because then you lose SSI). Medicaid waivers are meant to keep people out of institutions and provide a very basic level of health and safety. Too many parents assume the adult systems lend them rights and services like public school does. They don’t.
The most successful young adults with an I/DD have families who guide, protect, and support them in learning new skills, maximizing high school and school transition service opportunities, and exploring interests and careers while in high school at whatever level works for them.
Newly legislated is the Achieving a Better Life Experience, or ABLE, Act, which is essentially a savings account (funded by family and friends) that can be used by an adult with disabilities. The first states to actually have the bank accounts in place will do so in 2016. This does not replace a special-needs trust, which is another way to leave an inheritance to a person with a disability and not have it impact his or her Medicaid and SSI benefits. It is a unique kind of trust and needs a skilled lawyer to set up. (It has to be approved by Medicaid.)
It’s this reality of low-level services and supports that makes Solo Moms like me nervous about my daughter growing up and me not being here to manage her services and to help her continue to gain independent skills and remain safe and healthy and part of her community. And I didn’t even get to the housing issues. (Some waivers offer residential options but only in a Medicaid-approved housing situation, such as a group or host home.) Our kids can also apply for Section 8 housing vouchers.
But all the things we need to do, of course, are especially for our kids—who age but may not really grow up. Adults with I/DD are often unemployed, isolated, and unhealthy. We don’t have enough of the right opportunities for them to show their gifts and talents and take their places as a natural part of society. And we Solo Moms are exhausted and anxious. We need one another more than ever, and, together, we will keep fighting for our kids as they become adults.
Anna Stewart is ESME’s Kids with Special Needs Resource Guide and the Solo Mom of a daughter and two sons on the brink of adulthood. She’s a champion for the rights of people living with disabilities and those who love them.
Please feel free to contact us with any comments or questions.