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!