Managing Editor's Note: I meet some amazing people via Twitter. A couple of weeks ago a sibling contacted me to share the financial nightmare of a family with an adult on the spectrum. I requested a written summary I could post. Below, it speaks to the looming responsibility for tens of thousands of brothers and sisters across the nation. We think the "sandwich generation" is tough with both young kids and aging parents? Add in a severely disabled adult sibling to make a club (to the head) sandwich for a whole lot of Americans. The brother in question has myriad diagnoses - including the inability to suck and swallow from birth which struck me -loss of sucking mechanism is one of the side effects of birth dose Hep B with mercury (per the infant primate study) - which would have been in use in 1992. I didn't ask if the infant had had birth dose Hep B - but it's something to consider.
Here's the letter I received:
To whom it may concern:
This is the view of a sibling struggling with autism.
My Brother is 20 years old. He lives in a residential facility. When he was born, he was born without a swallow and a suck. He came home when he was 4 months old. By the time I was 10 years old, I could change a trachea and suction his lungs and put a g-tube into his stomach.
My Brother has taught me so many things and he doesn’t even know it. He has an IQ of about 34 maybe. My brother learned to eat by having a fund raiser and sending him to Upledger Institute in Florida. Our dreams came true, my brother could eat! As a sibling and being so young I remember a lot more than one might think.
I remember my dad would work half days so that he could go to the hospital to learn how to take care of my brother. My mom has always dealt with the school district, county, countless IEPs, etc. As a sibling I watched my mom and dad cry together and tell them that they would get through this struggle and would keep our family together no matter what the cost. We had 24/7 nursing in our home and I was turning 11 so I would stay up with the late shift nurses and they would teach me how to take care of my brother.
When my brother started to hit puberty my parents looked into residential living. In my brothers case he was either too complicated or some other reason that he couldn’t get accepted into any residential facilities. My brother broke all the rules of his diagnoses. Insurance companies sit in a board room and look at a file, they don’t even observe the child and they make their decision.
Unfortunately our Dad passed away in June of 2010, because of my brother’s age; he was entitled to SSD and SSI from my Dad. As of now his Medicaid is being cancelled and we received a letter that he will be sent home on 7/31/12. My brother lives in one of the best places ever and we need the laws to change for other families so they do not have to go through this.
Now my mom is on her own, fighting Medicaid, the payer, insurance companies and now has to deal with this SSD and SSI because his income is too high. My brother is nonverbal doesn’t even know what money is and is in diapers and the govt says his income is too high. We thought we were going to have a tough year due to him being an “Adult” when he is 21, but we get a months’ notice instead. We need to make a change. If a team of Drs, specialists, therapists can’t help my brother because he makes too much money how can my mom work and take care of him 24/7?
The bottom line is we need to make the change, if your IQ is 34 you shouldn’t considered an adult if you require a one on one all the time. He needs to stay where he is happy and healthy. The states and counties need to work together so that this doesn’t happen to other people.
So what now we get the waiver, we fight the school district, appeal and take up grievances this isn’t right, and we need to make a mark for future families so they don’t have to do what my Mom has to go through and the siblings don’t have to watch their parent(s) go through so much stress and anxiety of trying to straighten out the ppwork. This system needs to be changed.
As a sibling there is only so much I can do, I can pray for strength for my mother and pray we get this settled by the end of July.
A concerned sibling.