A Sibling's Love and Demands

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. 

On paper my brother seems somewhat ok, but if the insurance companies and the payers actually met him, they would be speechless like my brother, and they couldn’t properly diagnose him besides have muscular dystrophy’s, MR, and then finally low functioning autism when he was 15.  15 years to diagnose a child properly is an outrage.

Once he had autism written on his papwork he was finally accepted into a place in New Hampshire accepted him.  He was there a few months and then he got sick and they took him to a hospital and left him there, again he was too complicated.  After that their sister company accepted him in Wisconsin.  He was moved out there and lived there until he became too complicated.  Now he is in a wonderful residential facility.

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.

Thank you.

A concerned sibling.

Comments

[downtrodden]

Her story had me bawling my eyes out. It is so very heart breaking! I can completely relate being a single parent, abandoned by my partner because the burdens were too great. Running to a minimum of 10 appointments a week just for one of my disabled kids. It's all too much... how the system overwhelms and burdens families; creating impossible scenarios and constant hurdles, red-tape, piles of paperwork and mandatory meetings, closed doors, you name it - all burdens; on top of what is already extremely stressful and heart-wrenching. I'm praying for this family.

[oneVoice]

It just shows that love,support and hard work is not enough.
The system needs to be fixed,the assessments need to be done
by qualified independent doctors,the paper work needs to be improved and speeded up by caring people who truly understand this situation.Write or send your letters to all radio and tv.stations,to all newspapers.The system needs to change,this unbearable stress on care-givers NEEDS TO BE REDUCED.I wish you good health and strength,stay strong and
please keep us up-dated.I will keep you and your brother in my prayers.

[Martha Moyer]

This speaks to me with my son, age 38, in diapers due to paralyzed bowels and institutional neglect. He has autism and IQ of a child. He is learning how to play the game Candyland but the concept is too much for him. This board game is beyond his comprehension. I have him living in his own apartment; section 8 housing reduces rent; Home and Community Based Medicaid Waiver reduces cost for companion care; nursing; a day trainer. He didn't do well in either a group home or day options of daycare or dayhabilitation centers. Ours with severe issues are just not addressed well in Texas. I have two other families in touch with me who are fighting similar issues and now I learn that Texas has just been ranked the worst in the nation for health care and our Governor is considering not covering the poor under the new health care affordable care act. Yes, IEPs are over but the paperwork continues and I became his HCBS agency.Prior agency tried to cost him his life. They said they were taking care of my son't bowel issues but I found out when I took over THEY WEREN'T!

[AmyinIdaho]

It's such a shame that one must fight to remain in poverty in order to obtain the supports necessary for a minimal quality of life.

Does your brother have a Special Needs Trust? A trust will only protect assets (resources) from being counted when looking at Medicaid eligibility not income. If it's the income that is causing havoc for your brother's situation right now - you could always refuse the payment (you would have to do this formally with the agency in a way that will stop them issuing payments). This would keep his income low enough to maintain eligibility which would allow him to stay in his current housing situation.

So sorry that this is an additional aspect of care-giving that you must learn and endure.

[rosycurler]

This post is very helpful. Thank you for taking the time to write about your experiences and concerns for the future.

[Benedetta]

She is really young to have to live like this, fearing the future and the future is so unknown and depending on what other people are going to decide - everything/her life and how it will be lived -- is so out of her own hands. .

I would like to know how this finally turned out???? When she wrote this - was it before June - June only passed a few days ago?

[Felicialeggiobraud]

Wow. My 13-year-old son is high-functioning, but concerns about his long-term care (if any gaps in recovery remain) can be all-consuming. Here in Louisiana, our governor, Bobby Jindal, is proudly cutting Medicaid services (~$860 million). I'm sure that he assumes that folks like me (who now must rely on Medicaid) simply need to work harder and more often. What he doesn't realize is that my education and career fizzled when it became clear that I had to be available for my son at any given moment (babysitters, including relatives, and day-cares were often completely unable to calm him when I left for work or school). Professors and bosses have limited patience for such sporadic absences. The tidal wave of special-needs children becoming adults who need services will be even more overwhelming. An obvious first step would be to quit letting pharmaceutical corporations dictate first-steps in our children's (non-)health with how many toxins they can inject into our babies. The fact that my son has 2 sisters and a brother who will probably outlive my husband and me does little to comfort us.