Help.

Naively, I thought that if you “did the right thing” in this country it would pay off.

 

Naively, I thought that if I did all I could do to help my son, I’d be able to get help for what I wasn’t able to do for him.

Boy was I wrong.

See– in Michigan, at least, you can’t get help with a disabled child unless you are considered to be low income.  You can ONLY get help if you qualify for Medicaid. It doesn’t matter if you have a 90 pound ten year old who isn’t potty trained and ruins everything in your house because he’s destructive. It doesn’t matter that he gets aggressive and mean at times and is self injurious. It doesn’t matter that he has the mental capacity of a toddler. It doesn’t matter that he needs to go to multiple doctors and be on multiple medicines and supplements. It doesn’t matter that your insurance company randomly decides to stop covering therapy and you have to fight them again and again to try to get it restored. It doesn’t matter that you HAVE to work because you can’t live off of one income and there is absolutely NO help for families with disabled kids. You can’t drop them off at latchkey.  You can’t hire a neighborhood teen to babysit. It’s all on you. You have to research treatments…and doctors…and schools…and therapies. It’s an uphill battle every single day.

My husband and I pay out of pocket for so many costs related to Sean and we just scrape by much of the time. Last summer, I was given Medicaid in an error by the state while trying to be placed on the autism waiver list. (The autism waiver which is nearly impossible to receive.) My whole family was given it in error. We could have kept it and it would have given us all dental, vision, prescription, and medical coverage. Our kids could have gotten free lunch…there’s $45 a week right there. BUT it was an error and I didn’t want to take it if I didn’t really qualify for it. It took me SIX WEEKS to get that reversed.  During that time we didn’t take advantage of the system.  We could have easily, but we didn’t. I have tried multiple times to go through the “right” channels and get some sort of help for him.  Everything ends up being a dead end.

I’ve been told by people who work at these agencies (DHHS, CMH, SSI etc.) that I should have kept the Medicaid even if it was a mistake. I’ve been told to quit my job.  I’ve been told to get a divorce so our income on paper is less. This is wrong and disgusting. It took a lot of pride swallowing for me to even seek help, never did I think it would be this hard to get something. We NEED respite care desperately. We need help to cover his therapy which our insurance has cut and will likely deny our appeal.  We need help.

Sean is severely impacted by autism.  He functions at about a 2-3 year old level.  He is nonverbal. He is not potty trained. He needs help with most of his basic needs. He is very loved and well cared for, but I’m not going to lie, he is exhausting.

It is 2am right now and I’m up with him.  There is unfortunately no sleep in sight. I have to get ready for work in a few short hours. I have to keep my job because I have no choice. Everybody always tells me that they don’t know how I do it.  The truth is that I “do it” because I literally do not have a choice.

 

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We need help…

I’m not ashamed or embarrassed to admit that my family needs help. Of course the financial cost of our journey with Sean is a pretty expensive one, but that’s not the help I’m referring to in this post.  Somehow we figure that out. We make our deductible payments and copays.  We squeak out the money for the supplements and treatments each month. Kelly works overtime and I’ve been working two jobs since the spring.  We make it work.  When you come to our house, you’ll see we could really use some new carpet, we have a couple of new holes in the walls that need to be fixed, a couch that has a few holes in it, and a refrigerator with some dents on the side. This is mostly due to Sean unfortunately, but not entirely.  Would a lottery win be helpful? Sure would, but that obviously isn’t realistic. So until we slowly replace things, please just look the other way. 😉

What we really NEED is respite care.  We are not the only family in our similar situation that needs this help. I have talked to many parents who need it and can’t get it. You can pay for respite out of pocket, but it’s expensive and if we had that kind of money, then this post wouldn’t be needed.

Today, we found out that the therapy hours we thought we had set up are not going to work out. I’ve been off all summer from school thinking that I was all set for returning to work on Tuesday and found out today that we need to pick Sean up earlier than we had planned.  That means that I have one business day to figure something new out.  To say that I’m upset and frustrated is an understatement.  I love his clinic, but I really do not think this is fair to us, but like my mom used to always tell me–nobody ever said that life is fair. So it’s the next set of cards that we’ve been dealt and Kelly and I will figure it out.

However, it dawned on me today that it comes back to not having respite care.  If we had respite care and help with picking him up from therapy each day, it would really matter if the time changed. (not that I wouldn’t still be upset, but it wouldn’t feel like time to panic a bit)

There is a process in Michigan to receive help if you do not qualify for Medicaid.  (I have a whole long story for another post about what a ridiculous government mess that was last summer.) You have to first apply to Medicaid, get denied, and then get put on a waiver list.  We did this process.  It should have taken about 30 to 60 days max, but instead it took close to six months.

There are about 68 waivers given out in the state of Michigan. (I’ve been given a few different numbers all in the 60s so 68 is pretty accurate.) That is not per year.  That is at one given time ever, for the whole state. I was told that Sean was in the “middle” of the list in Macomb County.  There are 83 counties in Michigan.  I can only imagine how many kids are on that list waiting for someone to age out at 18 or pass away. That’s pretty much the only wait to get the waiver in our state.  I also found out that the waiver isn’t just for autism families.  It is for any child whose family doesn’t qualify for help through Medicaid.

Not long ago, I went to a meeting at the Macomb ISD for parents of special needs kids to find out about services and help available to them in Michigan.  I was really excited because I naively thought there might be some help out there that I wasn’t aware of for us. I ended up leaving after about fifteen minutes after realizing that they were going to share all these great things…BUT only if you qualify for Medicaid. I actually raised my hand and asked the presenter if this was true. He said yes and I got up and left.  I wonder how many people in Michigan are receiving Medicaid when they really shouldn’t be?  That’s for another post too…

Parents are actually given the advice of quitting their jobs and qualifying for Medicaid. I know at least two families who were told they could divorce on paper and then likely qualify as a single parent household.  Really? Families that are struggling every day with children who have been dealt a pretty unfair hand in life (in my opinion) can’t get any relief or help unless they cheat the system? I think this is wrong and I want to change it.

Things with Sean have been extra difficult lately and it seems to be hitting us at every angle. In the last few weeks, we found out that our insurance is partially denying ABA services, our favorite and most helpful neurologist is closing his practice, Sean’s speech services have been cut and his hours are now changed too,  On top of all of that he’s weaning from abilify and although he’s having pretty good days at therapy, he’s a bear at home as of late. He is destroying things. Spitting on everyone and everything. Smearing poop. Hard to get to sleep. Being really mean to our pets. Not listening like he used to. SO.MANY.HARD.BEHAVIORS! 😦

Honestly, I feel like giving up.  I know that I won’t, but I’m so tired of fighting and so tired of one hurdle after another. It’s hard not to feel hopeless at times.  If I didn’t have my faith, I honestly don’t think I would make it.  In fact, I know I wouldn’t because even with it, I’m having a hard time lately.

It dawned on me tonight.  Maybe all of these hurdles are just pushing me to do something to change this for not only my family, but others too. This mom is beyond tired. This mom is upset. This mom is feeling defeated. But this mom isn’t giving up.

The gloves are on…