Sunday, July 22, 2012

Winning the Prize

Years ago, I used to fill out entries for the Publishers Clearing House contests, hoping that some day, the Prize Patrol van would pull into our driveway, bringing roses, balloons, and best of all—a giant check showing that we had won the large cash giveaway. This week, we had something nearly as exciting happen as we found out that Alex qualified for state disability funding that will pay for a number of services for him. First, we were notified that he qualifies for Medicaid, which will help pay for his medical expenses. Then, we received a call that he qualified for the Indiana Medicaid developmental disability waiver, which will pay for various services to help him become more independent. Although the supervisor who came to our home this week to discuss his services budget didn’t bring roses and balloons, the file folder indicating how much money Alex would receive was essentially the equivalent of the giant check often featured in the Publishers Clearing House commercials. Needless to say, we were thrilled.

Waiting for disability funding is a notoriously slow ordeal in Indiana. Many parents wait several years before their children receive money for programs and assistance they desperately need. When we started applying for funding about three months ago while Alex was hospitalized, an official from the state agency initially told us that we would likely have to wait two or three years to receive services. With the help of Alex’s caseworker at the hospital, we were able to move things along more quickly. Since she knew how the process worked, she guided me through the arduous paperwork, expedited forms by faxing them for us, made phone calls pleading our case, and scheduled necessary medical work while Alex was in the hospital by arranging a psychological evaluation, a physical exam, a TB test, and a chest x-ray. Having her as our advocate was truly a blessing because I know she moved things along much more rapidly than we could have done on our own. While she was taking care of these details, I was busily filling out required forms and submitting documents, which made my organizational skills come in handy. At one point, I asked Ed what people who weren’t organized do in situations like this, and he responded, “They marry people like you.”

Once all of the paperwork had been sent to the state agencies, we were told that although “there is no timeline,” we would probably have to wait at least four or five months. In the meantime, I decided to investigate various agencies that provide services for adults with autism in our county and adjacent counties. Between Internet research and several phone calls, I had a better idea of what kinds of services each provider offered. Also, Ed, Alex, and I toured three facilities to see first-hand what programs might best suit Alex’s needs. As I mentioned in a previous blog entry, all three of us were especially impressed with Lakeside, a local facility that operates a curriculum-based program for adults with disabilities, very much like a school where Alex could continue to develop skills and learn. Once we made this decision, we have been working with an intake coordinator to begin the process of considering Alex for enrollment.

One of the prerequisites for Alex’s enrollment in the school program was to have a behavioral assessment. After more Internet research and making several phone calls, I found two therapists who could evaluate him. Some therapists indicated that they don’t have experience with autism, and those with autism experience have so many clients that they have waiting lists for new patients. As I explained in my last blog entry, our first behavioral assessment essentially was a waste of time because the psychologist wanted to run many more tests than we felt were needed. However, we were able to find another therapist with extensive autism experience who was able to see Alex within a week. We were very impressed with her warm interaction with Alex and her understanding of autism. After our hour-long session in which she asked all three of us questions to gain more insight into Alex’s behavior, she told us that she felt confident that she could write a behavioral assessment based upon that single session. Moreover, she indicated that she could write the report we needed within a week. In addition, she explained that once Alex received state funding, he would be eligible for behavioral therapy through her office in which therapists could come to our home and work on not only curbing negative behaviors, such as his impulse control issues, but also work on helping him develop positive behaviors, such as self-help skills.

When the supervisor from the state-appointed agency that helps clients who receive the developmental disability waiver came to our house this week, she explained that based upon all the information we had provided, Alex qualified for several services. First, they will pay for a day program for him, such as the Lakeside program. They will also fund transportation for the day program; a van can take him from our house to and from the day program so that we don’t have to drive him ourselves. In addition, they will provide respite care as needed, so that a qualified caregiver can come to our home and watch him, allowing both Ed and me to leave the house and know that he’s in good hands. Another service offered is the behavioral therapy we had learned about during his behavioral assessment, and we requested that the therapy group where he had his assessment done provide this service since we feel confident they will work with Alex well.

While we would ultimately like Alex placed in a good group home, we discovered from the agency supervisor that Indiana is moving away from this concept in favor of supported living. A more likely scenario for Alex, she explained, would be that he would live in an apartment with two roommates who also have disabilities, and they would have caretakers provided round the clock to help meet their needs yet working to make them more independent. Since I hadn’t considered supported living as a possibility for Alex, this concept seemed a bit shocking to me at first. However, the supervisor explained that this program offered more freedom, as Alex could move from one apartment placement to another if needed more easily than from a group home. In addition, finding an apartment here in town would be easier than finding a local group home placement. Again, we plan to work with our local disability service provider to see what they can find regarding supported living placement and will pray that when a good arrangement comes up for Alex, we will know this is the right time for him to move. Until then, we are thankful that the process of getting him state aid proceded much more rapidly than usual and that our local disability agency offers outstanding programs that can meet his needs. Once again, we wait patiently for the next step God has planned for us, and pray that all three of us will adjust well to the changes, knowing that He has arranged everything in advance ultimately for our good.

“Let all that I am praise the Lord; may I never forget all the good things He does for me.” Psalm 103:2


K. C. said...

I'm so glad that the funding is appearing! It really sounds like you have had some wonderful people helping you advocate for Alex and his future. I feel like a lot of that is a testament to all of the good karma you have put out into the world.

Pam Byrne said...

Thanks, K.C.! I have never heard of anyone getting state funding this quickly, so we truly feel blessed. God is good!