Author Archives: David's Father

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.

You can “Get Your Joy Back”

My friends.  As many of my readers know, over the past 4 years, we have struggled with getting our son the services that he needs.

hope and help are on the wayInitially this began as a struggle with our local education authority.  Gradually, it transitioned to psychiatric residential treatment facilities.

Constantly being aware of the needs of our children, being ever vigilant of their every move, mood change, or behaviour can be taxing on any parent.  After all, we are not able to run our homes like the facilities we find ourselves placing our children in for care.  It strains family relationships, marriages, the childhood of siblings and so many other facets of our lives.

A short time ago, I was humbled to receive an advance copy of the book “Get Your Joy Back” by Laurie Wallin.

The book is like a roadmap for the beginning stages of mental health.  I read it the first time over the course of a weekend.  Now, I am going back through it a second time.  It is now heavily highlighted with passages that resonate with me.  Passages such as:

  • p 38 — If stress is our silent killer, unrealistic expectations are its abettors.
  • p 43 — It’s easier to nurse resentment than to allow ourselves to feel pain, guilt, sadness and fear.
  • p 43 — resentment is a recipe for building walls
  • p 43 — Honesty about what frustrates us and bothers us doesn’t make us bad parents.
  • p 45 — Because sometimes special needs don’t feel special at all; they feel more like a nightmare. It’s okay to admit that
  • p 48 — Active forgiveness is doing forgiveness. It means we intend forgiveness before we get out of bed to face each day with our children.
  • p 51 — stop reacting and start responding to the challenges
  • p 57 — Joy happens when we stop trying to avoid or FIX our child’s quirks, and instead ask God for for eyes to see what He intended when He wired them that way.
  • p 61 — Hebrews 11:1
  • p 86 — We feel isolated or left out

In the coming weeks, I will devote one post a week to portions of this book.  Why?

Because I think it is that valuable.  That it is important to our own mental health.  When was the last time you felt true joy?  I make no guarantees, and don’t claim to be an expert, but through the process of finding my joy, I hope to share this journey with you.

Do you need to be in touch with the “touchy feely” side of yourself to get something out of this book?  No.  Honestly though, if you have a child, don’t you have contact with the “touchy feely” side of your personality?

That we may all experience joy again.

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?