Family Supports Waiver

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This past summer J.J. was deemed eligible for help with the things that create the bad days for my Buddy.

Just two months ago, he started receiving services through the Family Supports Waiver, which is through Medicaid. I had applied for this waiver along with two others – the Developmental Disabilities Waiver and the Autism Waiver – when J was first diagnosed with Autism Spectrum Disorder five years ago. We were then placed on the waiting list for each of these, like most, if not all, families are when they first apply.

I was beyond excited when I found out J was being taken off the waiting list and being considered for services that until now, we couldn’t give him because of the high price tag.

Now, here we are a few months, several forms filled out, countless papers signed, many phone calls and meetings and decisions later… And we see two lovely ladies and one kind gentleman each week, at the moment for a combined total of 8 to 10 hours each week. This is a HUGE amount of services, especially when considering we will never see the bills.

J is receiving Music Therapy, Behavioral Support Services, and Participant Assistance and Care through the waiver. So far, Music Therapy has been absolutely incredible!! The Music Therapist works so well with J — she challenges him, yet she makes it fun enough that he doesn’t realize he’s getting pushed to do things he normally wouldn’t care much to do.

We are only in our third week with the Behavioral Therapist — this service took a little longer to get started, but judging by how well she has done these first few weeks, I think she will be an enormous help with J.J. beginning to learn how to identify and handle his emotions in a more appropriate and constructive manner.

The third service, Participant Assistance and Care (PAC), is not a therapeutic service like the other two. Essentially the service provider can work on almost any goals we have for J, but there is not a clear-cut plan of strategies on how to meet the goals. So far, the service provider has been wonderful, kind, and attentive, but it has been a challenge for me to let things play out without a strategic written plan. I want J to get the most out of these services as possible, so it is hard for me to accept the days when it seems like not much was accomplished. I do consider that, perhaps, I simply fail to see the benefits of J’s hours of interaction with these other individuals each week.

These waiver services obviously have several benefits:

  • Therapeutic and Social Services that are free to the clients
  • Eligibility is based on the individual’s disability and need for services, not on income
  • A relatively large budget — I believe we have around $16,000 total for the annual budget

However, I do have some cons, which are primarily personal issues:

  • Having therapists and service providers here for 8 to 10 hours each week greatly cuts into our school hours
  • Having these therapies/services three days each week means I have to keep up on my housework a lot more
  • There is the added stress of having to keep others updated constantly on your child’s progress, inner-workings, household dynamics, etc… One of the beauties of homeschooling is not having to work with others on your child’s life, progress, and education. Now I have to do that, not with his education, but on the goals stated in his Individualized Service Plan (ISP).
  • I can’t wander around in my pajamas all day as often

Basically the cons all add up to lessened flexibility in our day-to-day lives. I can’t just decide on a Monday, Tuesday, or Thursday that we should go to Eagle Creek Park because the weather is beautiful. While it is true that certain tasks to achieve the goals for J have been delegated, I am still gaining much more work and stress because of some of the things listed above.

J.J. already takes a great deal of time to complete his school work each day, it has been extremely difficult to accomplish everything we need to do, and so our school hours often spill over into the weekend.

However, despite all of this, I am welcoming the extra work because (I hope) it is for J.J.’s best interest. I hope these services make a noticeable impact on his behavior and level of independence. We shall see with time.

Have any of you dealt with these services for yourself or someone you know? What has your experience been? As always, I would love to hear from you.

Have a beautiful day!

Five Year Anniversary

This past Sunday, October 12, 2014, was the fifth anniversary of J.J.’s diagnosis of Autism Spectrum Disorder.

I honestly wasn’t sure how to feel… I’m not sure I felt anything besides pure astonishment that five years has already passed since that nine hour day at Riley Children’s Hospital.

Since the diagnosis, my daily life has been filled with one reminder or another of the diagnosis — sometimes it is positive, and sometimes it is negative. There are phenomenally great days, and unbelievably bad days. I am grateful for how much progress J has made, yet I am fearful of what the future may hold for him.

The world in which we live is full of doubt, yet hopefulness in the face of such doubt. I don’t know what the rest of today holds for J…let alone 10 years from now when he will be a legal adult. He could look the Wide World in the eye and challenge it to hold him down. Or he could need assistance in one form or another for the rest of his life.

There is such uncertainty each and every day, that at times I find it insufferable.

Yet…

J has provided me with such an incredible opportunity to grow not just as a mother, but as a human being, and to look at the world with wider eyes, more compassionate eyes, more loving eyes. I believe…I know it is because of him and the kind of child he is.

Today J stands up tall as an eight year old boy and reaches almost up to my shoulders.

Today he has whined and complained about his schoolwork and gotten angry when I insisted he had no choice in the matter. He sighed heavily at the thought of having to drink water before his meals. He has fought with his sister about where to sit on the couch, and he has fought with me about several things just as silly.

However, today J has also given countless hugs and kisses to Ava, Nathan, and I. Today he has cuddled close as we did our reading, and he has worked on writing a lovely and creative story. Today he has emphatically studied nutrition and insisted that he tell me all about it at least three times.

Today has been a roller coaster, as most days are.

I take the bad with the good and insist on remembering more of the good than the bad. Each day can be an exhausting challenge for Nathan and I as his parents, but it is also more rewarding than I could ever express when we think about where the three of us started on this journey. All three of us have come a long way, and we should all feel so very proud.

I know I am certainly so proud of my Buddy, especially…

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He’s pretty darn amazing.

Photo Credit: Nathan Monk