We took the NY Sibling Survey

Earlier, I had written about the NY Sibling Survey posted online by Cornell University.

Today, my husband and I took it - he answered it and I input it.

In all honesty- will it make a difference?

Realistically, I don't think so.  But first, a comment:

It would have been nice if some of the questions had space for explanation.

For example - how often do you talk to your siblbing?

Well, it isn't too often because Bil is very reluctant to use the phone.  His brothers only talk to Bil if they are visiting in person, and both of his brothers live out of town.  But saying "less than once a month" implies we the siblings don't care. That is very far from the truth.

There also seemed to be an emphasis on training. Questions like: what kind of training do you need?

Siblings don't need training as much as they need help!  Physical help.  Not just referrals or education. Aging parents who don't want to let go of their caregiving responsibilities need help big time!  Training isn't going to give siblings and aging parents the help they need.

Apparently we will be trained to death but won't get the help we need.

What help is that?  Let's start with appropriate housing for our siblings, and go from there.

Oh well.  I didn't have high expectations.

Like a Dance

Two steps forward.  Three steps back.

Bil refused services offered that could have helped him with some of his anxiety issues.  We were hopeful, but once again Bil turned the services down.

It's disappointing.  It is a big burden for his mother, who finds herself in her mid 80's with increasing mobility issues, to take him everywhere.  We do what we can but we live far from him and can only see him a few times a year.

It sure would help if he would permit someone to take him on outings, take him shopping, and so forth, but it is very hard for him to trust anyone.  Meeting a new person can generate a ton of anxiety for him.

These services may have helped him overcome some of this fear.

All we can do is keep trying.

Man with Autism Denied Heart Transplant -Please Be an Organ Donor

I pray my brother in law Bil never has any kind of medical problem.

There was the little girl in the news several months ago because Childrens Hospital of Philadelphia (CHOP) denied her a kidney transplant (a family member was the donor) because the little girl was (OK we are going to be politically incorrect here) intellectually handicapped.

Childrens Hospital of Philadelphia of all hospitals.  Years ago they saved the life of someone I know.  I guess lucky for him he wasn't handicapped.

Now, another hospital has denied a 23 year old man, with autism and "psychiatric issues" a heart transplant.  And, what a surprise, in Pennsylvania.

What is going on here?  Well, like so much in this world, it is more complicated than a surface rejection of someone with a disability.  Transplantable organs are scarce.  Doctors, everyday, must do a type of triage.  A terrible type of triage. (this was not an issue in the CHOP case but it is with the man with autism case.)

Yes, organs are scarce.  But do not people with autism have the same right to life as all of us?

But in the meantime.....

What needs to be worked on first (as it happens, I know someone with kidney disease - not Bil, but someone who knows Bil- so this is an interest close to my heart) is why we have shortages of transplantable organs in this country.  It's because the pool of people who have declared their OK to have organs taken from them in case of untimely death is a lot smaller than it should be.

Unlike kidneys (and livers), which can come from living donors, hearts can not.

There is one immediate way to increase the supply - sign the part of your drivers license that permits organ transplants.  If you are applying for a license, or renewing one, check that box.  Some states also have a registry.  Please do it.  Today, if possible.  You could indirectly save the life of someone you know or love.


And back to the issue of people with handicaps and organ transplants - there must be a STOP to using a person's handicap to deny a transplant just because there is a handicap.  Even the doctors in the man with autism heart transplant case admit that his autism in itself would not cause him to reject the heart.  It is other issues - that, perhaps, could be controlled.  Yes, antirejection drugs would be needed, but what happens if, for example, if a person with autism has diabetes?

But until there are more organs available - and more enlightenment about autism - I fear for Bil.

The NY Sibling Survey is Live

Passing this along to all NY sibs of a disabled person!

 NYS Sibling Survey Page!

Are you an adult (over 18)?

Are you the brother or sister (sibling) of a person with a developmental disability*?

Does your sibling reside in NYS (including NYC)?

If you answered "yes" to these questions we want to hear from you! Please complete our New York State Siblings Needs Survey. We are trying to better understand the needs of siblings in New York State. The findings from this survey will help us plan the next steps to support adult siblings of persons with developmental disabilities. We will also give you a list of sibling web resources at the end of the survey.
The survey will take about 10-15 minutes of your time.

Click on this Survey link:

New York State (NYS) Siblings Needs Assessment Survey

We want to include as many siblings as possible. Please promote the Sibling Needs Assessment Survey by forwarding this email and/or encouraging siblings to complete the survey.
The survey may also be reached at this easy to remember web address: www.nyssibsurvey.org
You can find out more about the survey and the organizations and people that are helping with the project at this link:
http://www.ilr.cornell.edu/edi/p-NYSSiblingNeedsAssessment.cfm
In May 2013, information regarding the survey findings will be posted at this link as well.
Please forward this message on and help us find more siblings!

A Chance for Bil?

I think we may finally be making some progress in obtaining some services for Bil, at least on a temporary basis.  It's too soon to tell yet but we are holding our breaths, my husband and I.

I hope the service Bil will be able to get will greatly impact his quality of life.  Hopefully it may enable him to eventually overcome some of the fear and anxiety he faces when given the opportunity to have something new in his life, even if that something new enables him to do more of the things he loves to do.

In the meantime, I am now in contact with another person at the place where Bil receives Medicaid Service Coordination, someone who has known Bil for years.  This can only be a good thing.

I can't say too much more right now.  I should probably know by sometime next week.

I hope so that our hopes will not be dashed.

The Conspiracy of Silence

This is a belated father's day post and rant.

I couldn't help but think when I read this New York Times blog post posted last father's day.....

Sometimes I resent Bil's parents (my in laws) so very much because they just don't want to LET GO.

My father in law claimed he had "everything all prepared" for Bil.  When my father in law died, we found out he had done:  nothing.  Absolutely nothing.  Never got him on Medicaid, although we found out later Bil was the ONLY PERSON in his sheltered workshop not on Medicaid. (Why does that matter?  Because you can't get service coordination, most services without Medicaid eligibility.).  By the time this happened, budget cuts had started and we really had to struggle to get him onto Medicaid.

Left Bil's mother holding the bag.

He hadn't seen a dentist in years and had bad breath that could knock you over.

Didn't they ever smell it?  I couldn't even hardly ride in a car with him without gagging.

She did what she could after her husband died (and yes, Bil did finally see a dentist) but now she is in her 80's, has increasing health issues, and is more and more frail.  Yet she won't let go.  We (Bil's brothers and sisters) have to be responsible for Bil once she is dead but she just assumes this is going to happen by some kind of osmosis.

But then, I get to thinking some more....

We are fortunate in a way though that Bil's Mom still wants to care for Bil with all her heart and soul.  Because that's the way "the system" is set up.  Never mind people in their 80's....I have read about people in their 90's caring for their children with autism!! It has to be so very hard, with failing eyesight, failing ability to walk, failing hearing....and they have this burden, which state governments are more than happy to let them do WITHOUT ANY HELP.  Although said parents are saving the state millions.

Should the state help?  I guess that is the basic question here.

You know the saying that "it takes a village to raise a child?"  It also takes that village when people can no longer shoulder a burden.  They deserve that help.

They deserve to be able to put that burden down.

And, to flip this again, parents also need to help their non-disabled children ease into their burdens.  Don't just assume it will happen by osmosis.

Sometimes all of this just makes me want to scream. 

The conspiracy of silence.  The elephant in the room.  I am so sick of it.

The Miracle Project and The Magic Paintbrush Project

This post isn't about Bil.  Well, maybe it is, in a way.  Two shoutouts. 

Again, I can wish these projects were around when Bil was younger, but wishes really don't accomplish anything.

I wanted to give a shout out to actor Jack Black and his work with autism, as he raises awareness of autism
through The Miracle Project.

And locally, there is a wonderful organization in my city called The Magic Paintbrush project.

One day, there will be an organization just for Bil.

So many lost opportunities.  We still hunt for the found opportunity, the one that will make a true difference in Bil's life.  Until then.....

Sigh.

The Medicaid Lifeline

We got an update from Bil's Medicaid Service Coordinator. 

Some of the things put into motion as a result of my husband's conversation with her in July are progressing.

But we can't lose sight of the fact that cuts in Medicaid and other services continue.

So many people don't realize that Medicaid isn't just for so-called Welfare Queens.  Many people with disabilities depend on Medicaid, and not just for their medical and dental services.  (I also note here their selection of doctors and dentists is greatly reduced from if they had private insurance - and it is so hard for them to get jobs offering private insurance here in the United States.)

They depend on Medicaid for just everyday services - someone to help them learn life skills, someone to keep them company and allow them to interact with the community, even sometimes someone to provide counseling in life's harder moments.

We can only hope Bil can get these services before the Medicaid rug is pulled from underneath him.

People First Disabilities Last

Ever hear of People First Language?

I do link to articles on occasion that refer to "autistic people".  But I try to abide with People First language in my own blog writing.

Bil is a person with autism.  He is not autistic.  Autism is just one aspect of who he is.  Granted, it is an important aspect.

But it is still one aspect of a man who loves to read horror novels, loves to follow his New York Mets, and worries about the weather where his brothers live.

A North Carolina website gives a nice explanation of People First language.

So why do I mention this?

I'm still finding a number of otherwise worthwhile articles who describe people with autism as "autistic".  Well, at one time people were also "confined to wheelchairs", were "mentally retarded" and were "blind as bats". The language was a symptom of beliefs that these individuals were not worth the time and trouble to provide them with services and supports that allowed them to flourish to the best of their ability.

Thankfully, state statutes, more and more, are shedding this "person is the disability" language.

But People First isn't always a good thing, as I will blog about in the near future.

Adults with Autism and the Clergy

My brother in law is one of a growing number of adults with autism.

What will their future be like?

My brother in law did not come of age in the (what I call) era of A.D., the after Autism Discovery era.  When Bil was born many people with autism were diagnosed with mental illnesses.  In fact, my mother in law just coped as best she could and it was a friend who encouraged her to take her son for an evaluation - when he was almost 18.

No Child Find.  No schools trying to identify him, other than as a person fit for special ed, to be warehoused in a terrible BOCES placement. (it's a long story, but he was able to get out of it and was somewhat mainstreamed in high school.)

His adulthood has been spent in a sheltered workshop.

But what about other adults?

I have a blood family member with PDD-NOS.  He is a young adult now, in his 20's.  He is a lot more high functioning than Bil, and has had all the proper supports, but he struggles in many ways.  He has an ambitious career aspiration, which he has been working towards for many years - to be a clergyman.

I find that most interesting, given the level of social interaction a clergyman (no matter what religion) or woman must engage in.  Counseling, consoling - it is a lot more than learning the Holy Book(s) of your particular religion.

For this reason I found it of interest when I read an article about a Syracuse, NY pastor who has struggled for years before his diagnosis of autism.

I truly don't know what the future of my blood relative will be.  But I hope he can somehow fulfill his dream.