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Parents that have a kid with a serious mental illness are well acquainted with frustration. Annie Kitching is one of these parents.
In addition to the challenges of parenting a mentally ill child, Kitching, who lives near Lansing, also ran into a lot of roadblocks trying to find mental health care that could make a difference for two of her kids. Kitching adopted these children, a brother and sister. Before their adoption they had been severely abused, and that abuse took a serious toll on their mental health.
The kids struggled with Severe Emotional Disturbance, creating mental health challenges so serious they interfere with the ability to function in a family, in school, or both.
Despite her asking lots of different people and agencies for help, it took years for somebody to tell Kitching about the services that finally made a difference for her daughter. Finally, Kitching learned about the Severe Emotional Disturbance Medicaid Waiver. The “SED waiver” is a clunky name for a package of gold standard mental health services. With a waiver, families have access to intensive therapy, care in their home, art therapy, music therapy, and even a specialized summer camp.
Kitching says the services “are working wonders” with her daughter and she thinks they’re amazing. Tragically, Kitching didn’t find out about the waiver in time for those same services to help her son. Her son’s name was Ilya, and he committed suicide at the age of 17.
Now, Kitching wants to keep other families from missing out on services that might be able to help their kids, especially the SED waiver.
What is it?
The SED Waiver is a package of mental health services offered through Medicaid, but even families that wouldn't financially qualify for Medicaid can get them. Most private insurers don’t offer intensive services for mentally ill kids, so the state and some counties have stepped up to allow families that don't qualify for Medicaid to get an SED waiver.
The point of the waiver is to help kids before they need to be placed in a psychiatric hospital, and to deliver services kids need in their own homes.
The services are intensive, so only kids who are very mentally ill will qualify. The waiver also covers respite care for the family of the child, so they can get time to relax and reset, making them more able to deal with the challenges of helping to get a mentally ill child get healthy again.
Services last as long as a child needs them, which can be anywhere from a few months to a few years. Helping parents plan to transition out of the program and into less intensive services is a big part of the program.
Who can get this waiver?
A mix of money from the federal, state and county governments fund the waiver, and it’s expensive, so that limits how available it is.
Here are the limits:
- There are only a certain number of waivers available each year. This year the state has close to 1,000 waiver spots that need to last until next October. There are about 400 left right now.
- The waivers are available for kids under 18 who rate high on a scale that measures emotional disturbance. Kids need to be evaluated by the Community Mental Health Office.
- More than half of the state’s counties don’t offer the waiver (here’s a list of the counties that do have these services available, just scroll down the page a bit).
- Kids who are in foster care, or were in foster care, can qualify for services similar to the waiver no matter where they live.
Even if you don’t live in a county that offers the waiver, don’t give up hope. Al Way, who runs the Ingham County Community Health Office, told Infowire families should call their Community Mental Health office. Even if a county doesn't offer the waiver, there may be other services available.
How does my child get this waiver?
Community Mental Health (CMH) offices across the state have the most services available for kids with serious mental health needs than almost any other healthcare provider. If your child has a mental health issue, call or show up at your local CMH office and ask that they be assessed for services.
Connecting with a CMH is the first step toward getting services for a child, but depending on the screening procedures it may be easier or harder to get to them. Each CMH runs differently, and they screen calls differently too. Some weed out a lot of patients before they bring anyone in for an assessment, others don’t. Here's some advice Infowire gathered along the way from advocates and workers at the state and at local CMH's for how to be most effective when looking for services.
- Be honest and don't to hold anything back out of fear of being embarrassed or judged.
- Describe your child’s symptoms in a way that focus on how they’re able to function, because that’s what screeners on the phone are likely to be curious about. An example of describing your child this way would be to talk about if they’re able to ride the bus to school. Or, if they get sent home from school, can’t do chores by themselves or can’t control their moods or their anger.
- Ask, specifically, for an evaluation.
- Call in an advocate. The Association for Children’s Mental Health is an organization made up of parents who have mentally ill children and now try to help other parents in the same situation. In some counties, the Association has parent support workers.
- If you qualify for Medicaid and are denied services, you can appeal the decision. It’s called a Medicaid Fair Hearing.
Why are we stuck with a system that makes good mental health care so hard to find?
Mental health services are hard to find and expensive. The federal government, the state, and some of the counties have tried to improve access, but in the northern part of the state especially, services are hard to come by.
In order to offer the SED waiver, counties need to pay for some of the services, and more than half of Michigan’s counties haven’t done that. For some services, Community Mental Health is often the only provider, and high demand can mean some services have wait lists.
Private insurers also cover very few mental health services, especially for people who are very mentally ill. That pushes even more people towards the Community Mental Health offices, which don’t have the budget or the capacity to provide more services.
While families are in the middle of a mental health crisis, longer-term change to the mental health system might be low on their priority list. But others who would like to see more mental health services for children in their area can:
- Talk to your employer about which mental health services are covered under your insurance plan and which services you would like your plan to cover.
- Get in touch with elected officials.
- Call the Department of Community Health in your area and let them know what services you are looking for or would like them to offer.
- Become involved with a mental health organization like the Association for Children’s Mental Health.
If you have information you think would be useful to parents or guardians looking for mental health care for their children share it with us at firstname.lastname@example.org or 734-763-0538.
*This story has been corrected to reflect that kids who are or were in foster care can qualify for very similar services in every county, but can only get the waiver in participating counties.