What living with a rare disease is really like
Personal first hand experiences
https://www.michigan.gov/mdhhs/0,5885,7-339-71547_35698---,00.html The website and services I am talking about among this post.
We had these two service since the birth of my daughter. Since my daughter was born with 22q11.2 deletion syndrome. A genetic disorder that is uncommon but is almost as common as down syndrome.
Children's special healthcare and medicade just need to play nice together! If you are born with a missing piece of dna you should not have to fill the same forms over and over every year.
Dealing with these two services is beyond frustrating parents have full time jobs most of them. I do not because it takes a day or two to really focus on collect all of the data and information these two services need to gather.
if the people who are approving the paper work would just simply read and understand what’s going on but the deal is people who do these jobs can’t seem to be bothered to even help us fill these forms out with out passing the buck.
Example I call customer service at medicade and they tell me I need to deal with customer service at children special health for transportation for my child to get to and from doctors visits. The travel time is over 200 miles and they just made new changes therefor there new rules. So my child has an appoitment coming up to see the crainofacial team in Aug I’m not sure if anything will be covered they provid hotel travel and they also provide coverage to appoitments. Simple right?
Have you ever set up these services. First you need to set up the appoitment for the dr visits after pior authoriazing with the childs family dr which is another visit all on it’s own. then you need to take time and assess the services that are needed evulate what needs to happen get a treatment plan in place. Then it get’s approved by insurance based on your child’s disablity.
If you have 22q it not a clear cut answer. No one knows what causes xyz for treatments such as bella’s afos, or her adhd meds.
If you need to apply because your time to apply is March your child goes without meds for an entire month until you get coverage again.
Reapplying reappealing stress parents shouldn't have to take on top of everything else.
Bella needs new Afos the current ones are splitting and I need to set up appointments and Bella needs weekly therapy sessions.
Now is not the time to loose her insurance. It is what it is.
Insurance we have to reapply and hopefully we can get some meds for Bella that she currently taking before she is cut off and we wait a month for approval.
Which we will have but when a child is born with a missing piece of dna why must we keep applying. Ugh
Then there is the need for an Iep is coming up thankful we have a great team one less stress off my plate we are amending to make it so Bella can take the meep tests online and so I can add a few addition accommodations. I have to contact family services that’s a matter of aprovel’s process and seeing if your child meet’s their standared forms. If you have down syndrome or autism sure no problem.
If you have 22q no one knows what to do. Imigine as an adult how fustrating that is. I don’t have to imigine That’s what I get to deal with as a person who has 22q and a mother. So the stress on top of everything elese going on my husband is still looking for work it’s been 30 days since he was laid off from a company called kss and he had blue cross having blue cross messed things up for my kid on medicade when we had to make the swtich she was without meds for a week then as well.
her meds for adhd cost about 300 each. folican and guificne she also takes backflen for mild cp
getting the correct diagosnes for spastic cp on her lower legs that’s another night mare especialy when the dr who diagosned her at the u of m left. (all the good ones do) I had to go threw two neurologist that way with bella.
Transition to middle school her iep due Nov so we do the iep now when she goes to middle school she will be all set and services in place we have to have a meeting in March. no problem I can work with the school we can make a plan and set it in place. If I want someone to go over the iep with me and make sure I didn’t miss anything I might have forgotten about that’s another issue. The doctors office social worker left the office for another job. The one taking her place is going on maternity leave soon.
I’m sol either way I look at this and have to do this on my own and with my husband looking for work that’s a full time job he has had 10 interviews we are playing the waiting game. Oh did I mention that as soon as he get’s a new job we get to have the fun of having primary insurance again and medicade will say no way no can do no aproval.
I am always playing the waiting game. I am tired of waiting and having to be approved for everything anything.
Sure services are there but it’s not what you know it’s who you know when it comes to getting help and any kind of services and don’t get me started on mental health for my none austic child who is not harming herself or others. All my child needs is a medication evulation by a dr who can prescribe psycatric medications for adhd that isn’t a family dr. do you know what I can’t find locally in my area that takes medicade and if they do wont take on any more clients.
There is zero services out there that offer support and help for family's like ours. sure there are buildens with names and letters on them and people insides with warm friendly faces. I personally know a handfull of them. The problem is when you have a child with a disorder with a name not many have heard about no one knows what do do. Oh and don’t even get me going about Community mental health services. Bella could get the help sure but I have to make her condition much worst then what is for her to get seen.
Bella major issue is adhd and cognitive learning delay with poor executive functioning with social issues at school and some kids are singling her out causing more stress in which she internalizes it all inside and it effects how she eats. Our bills are paid sure for a few more months. We had savings but there is no saftey net for parents who have children with special needs. Don’t even get me started on ssi they said we owe them over 5.000 because they over paid mind you we got around 200 a month then 100 while my husband worked. Ssi says my daughter is not disabled but some 35 year old who has depression can stay living at home in his mothers basement smoking medical pot because he’s a angry guy get’s ssi maxed out.
The system it’s broken by the very people who created and run it. you can’t blame any president for this folks. The people need to speak up and advocate the other people they need to listen and help create programs that work for our kids not against them to save goverment dollars.
Sure websites with info mine being one of them smh but not one place that will "deal with it all instead of me doing it".
With out being charged an arm and a leg
The look of a frustrated momma trying to hold it together
Also her school fundraiser. Lol sighs I think I might want to start my own fund raiser but I am determined to handle this like a boss