Finding appropriate activities and services for a child with special needs can be a challenge even in a big city. Michelle B. and her daughter live in Boone County and those kinds of opportunities seemed doubtful.
"I really didn't know who to call. My 24 year-old daughter has Down Syndrome and I was looking into some kind of social activities for her. Since she got out of school, those kinds of opportunities are pretty much non-existent."
Michelle called her daughter's MDwise case manager. MDwise manages one of Indiana's Medicaid programs for low income families and for children and persons with disabilities.
A MDwise case manager referred Michelle to About Special Kids (ASK). ASK helps families of children with special needs navigate complex systems to access what they need to better care for their child. MDwise refers children with special needs directly to ASK parent liaisons as a quality initiative.
Michelle spoke with an ASK parent liaison. "My Parent Liaison helped steer me in the right direction and helped me know what to ask and how to ask. She told me what was reasonable and taught me how to deal with providers in a congenial way. She gave me the confidence to stand up and be the advocate I need to be, keeping an open dialog with the providers and services that I need to work with for my daughter." At ASK's initial contact with Michelle, she was searching for activities to engage her daughter in some social opportunities. The Parent Liaison was able to provide Michelle with several options to look into and completed a conference call with the Bureau of Developmental Disabilities Services. Based on this call, the two were able to determine Stephanie will be targeted to receive services through the Medicaid Waiver program. She was able to explain what the services were and how the family life could be impacted.
ASK parent liaisons all have children with special needs. They understand the frustrations parents are going through because they've had to jump through the same hoops. This creates an immediate bond of trust and credibility with the parent.
"After my first call, my Parent Liaison called me back to see how I was doing. I was having trouble with Bridges of Indiana, the provider I was working with for my daughter. Bridges provides community-based services for people with disabilities.
I had a quarterly meeting coming up with them and she helped me structure my questions. She gave me insight from her experiences on what was reasonable to expect. I wanted to get my view across without being antagonistic. She helped me look at things in a different, more cooperative way. She also told me to give it some time. She suggested that I don't jump ship… stick with it a little longer and keep open communication. Then if goals aren't being met, revisit the placement."
When asked what she would tell other parents about ASK, Michelle said, "No one understands what you're going through better than another parent, who has a child with a special needs. Dealing with all these agencies is a struggle, parents should take advantage of ASK resources."