Category Archives: Autism

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Happy One Year Placement Anniversary David

honesty doesnt make us bad parentsIronically, the day after we receive notice of denial of coverage of services for our son, is the anniversary of his placement at the current facility.  It has been one year since we placed David in a facility 500 miles from home.

Today, I am struggling with the stress of not knowing where we are at with my youngest son’s mental health treatment.  The denial of continued care is weighing heavily on my mind, and it will be Tuesday before I can file any appeals.

He deserves better than this from the system that is responsible in part for his care.  When we adopted him, he was ordered by the court to have complete state sponsored medical coverage until he turns 18.  This is Medicaid.

It isn’t safe for anyone for him to come home.  Even the staff that works with him day to day has said that.  A month ago, he was self-harming.  Cutting, and after they took the sharps away from him, he inserted his fingers into the wound on his knee and started pulling on it to make the wound larger.  Initially, he wouldn’t have needed stitches. The manic behaviours that he displays, the ceaseless energy – coupled with what changing facilities would do to his treatment plan… now is not the time for change.

As a father, I want to fix it and make it better.  I can’t do that, and while it isn’t my fault that the system is broken, I feel like a failure for not providing direct care for him.

Yesterday marks one year since he began his placement in the current facility.  The next closest facility that could take him if necessary is 700 miles away from our home, in Denver.  Like I said in a previous post, how does moving him further from family help him?

I am not looking for a debate about the ACA. I know what it is and isn’t doing for the people I know. It works for some, and doesn’t work for others.

About a month ago, I wrote a post “It’s not our fault.”  I guess I should go and read that one again.

I have this book that I am working through.  “Getting Your Joy Back” – I am going to read through parts of it again.  Need to find my joy.  And know in my heart that we are doing everything that we can for him.

a new year, more medicaid frustration

So what else is new?  right?

DavidReceived this notice from the facility where our son resides.

I am sure you will be receiving a hard copy in the mail, but I wanted to notify you that as of 1/10/2015, David’s  Medicaid has denied coverage for residential care and we were notified of this yesterday. (See attached letter) Facility is currently in the process of appealing this decision. I will keep you notified of the results of the appeal process which will be submitted early next week.

 

 

They enclosed a copy of the notice that they received from the determination company that is under contract to our state Medicaid.

The rationale for this decision is:  David is a 13 year old boy who is diagnosed with Bipolar disorder and pervasive development disorder.  He was in a residential setting in North Dakota for over a year and transferred to the current PRTF where he has been for another year.  He appears to be compliant with staff expectations for awhile, then acts out occasionally, suggesting he has reached maximum benefit in this current PRTF setting.  As reported in November 2014, his social worker indicated that visits with dad had gone well, and that David was on track to be discharged in January 2015.

Continued stay is denied. Placement issues cannot justify continued stay.  Consideration may be given to returning David to his family and home where he can receive ongoing therapy including PCIT type family therapy.  If the facility would like to request a desk reconsideration….

First, how does a couple of hour long visits constitute “visits had gone well”?  He has had zero home visits.  Any visits that we have had, include him being returned to the residence within 3 hours.  At no time has a visit gone over a 4 hour period.  If his behaviour is such that he is harming himself, and prone to outbursts of violent behaviours, how are we supposed to maintain him at home?  We live in a small town.  45 minutes from any where.  Are we supposed to move to a larger community so that he can receive the PCIT type family therapy?  What in the heck is PCIT type family therapy?

He was moved to his current facility because the last facility was afraid something like this would happen.  That services would be denied.

If services are denied, that means moving him again, and starting over again with new therapists, new treatment goals, new psychiatric teams, and likely new diagnoses.  Not to mention that the next closest facility is 700 miles away rather than the 500 miles from home that his current facility is.  How does that help our son?  How do we maintain a family connection across such a great distance?

While I would love to bring him home, behaviours and past experience tell us that it isn’t a good idea.  Not only for David, but for our other children.  If I bring him home, and we go back to the same old David, what happens then?  He is doing well in the current placement in part because of the highly structured environment.  Something that can not be recreated in our home.

Lord help us, we want what is best for David, and all of our children.  How can someone who doesn’t know him, and is reading what may at best be deemed incomplete progress notes, determine what is appropriate for him?

And for the record, the social worker never told us anything about discharging David this month.  That is completely new to us.

Generalizations, how they don’t help

We have this saying in the Autism community. 

“If you have seen a child with Autism, you have seen A child with Autism.”

You have seen one child.  Why one?

Because no two kids are exactly alike, including twins.

So why would it be any different for an adopted child?

David is adopted.  David has, among other things, Reactive Attachment Disorder.

I am adopted, I can see similarities in my behaviors as a child to David, just not as severe.

I know of a couple of other people, both children and adults, who are adopted.  You know what?  Unless you know that they are adopted, you can’t tell.

It isn’t like they have this tattoo on their arm, like a bar code or something that says “adopted”.

Why do I bring this up?

If you have seen one child that is adopted, one person that is adopted, you have see ONE.  You can apply a generalization to any given population and say that every one in that population has the same mental health issues as our son.  Mental illness, heck any illness, just doesn’t work that way.

That is like saying “your child is African-American, that makes him a thief.  and he should assume the position.”

Another fine example would be me saying that all school administrators are racist because they assume that any child of another race that is adopted automatically has mental health issues relating to said adoption.  If I was an administrator, I would be offended by that generalization.

So why would it not be acceptable for a parent to be offended when an administrator makes a comment “INSERT NAME here, is adopted, he needs to see a psychiatrist.” Like being adopted is some kind of stigmatizing flaw and needs to be corrected posthaste.  Being adopted is not a condition to be treated.  Hello!

So tell me, do school administrators everywhere make generalizations about a given population like this?  Or is it just certain ones?

Sadly, the child may need to see a psychiatrist.  But referring a child the way that this child was referred isn’t the way to do it.  Surely there is an appropriate way of saying “Your child spends an inordinate amount of time alone, playing, as a result, we think that your family doctor should be consulted, just to ensure that there are no concerns.”

I would think that there are certain periods in the life of a child where they just prefer their own company, versus spending time with others.  This is not a defect!  I don’t have a degree in education and I know that!

What parent is going to take a referral from a school administrator that appears to be either biased or racist?