So What Now began with parents and guardians or family members, including family of choice in mind. It is difficult to explain what it’s like raising a child or children with mental illness, intellectual or developmental disabilities and/or other chronic health conditions. There is so much to explain.
At times, it is impossible to think about anything besides getting yourself and your kids through the day. Many of us quit our jobs and relied on public assistance because we didn’t have a better option and in most cases, we didn’t have another option. We lost friends. Even family members became distant after a while. Some of us got divorced.
Although we are grateful for public health programs and benefits, the public health systems are incredibly difficult to understand. It seemed like we either asked the wrong person or asked the wrong question because if we got an answer, it was not helpful. It was difficult to get services. It was more difficult to change services.
There were constant changes in doctors, clinics, case managers and support coordinators. They changed all the time. It was like starting over with every new person. AT some point, we had to teach them how things worked and what they needed to do to get our kids what they needed. We learned that each time there was a new person, we were more likely to get the wrong prescription, the wrong service or the wrong information.
If we said anything, we might upset someone and that caused even more problems. Most of us were considered difficult, demanding, never happy, angry, hostile, impossible and our personal favorite, entitled. Which is ironic because these are entitlement programs – so our kids are entitled to health care.
Sometimes things went really well and we could catch our breath. Other times it felt like one thing after the other. Most of the time, we followed all the rules, filled out every form, made it on time to every appointment, completed every intake, answered everyone’s questions, tried everything that was recommended and we still couldn’t get what we needed. So what now?
So what now? That question that sums up what it’s like to parent a child in the public health system.
SO WHAT NOW?
We have simple answers to complex questions for parents, spouses, siblings and other important people involved in a young adult’s life. Contact us!
*Family is always defined as family of choice – meaning that family includes individuals who may not be connected by biology or marriage, but are bound together by shared experiences, care and commitment. For our purposes, “choice family members” are the people who have been actively involved in the child’s life and share responsibilities for the child’s healthcare.