Saturday, August 30, 2008

Better Late then Never

If you were reading my last blog post I ended by letting everyone know I would be back after the bedtime routine. I guess, I should have said in a day! It seems this is how life can work out when family is first and children have special needs.

Ironically, we had a rather RAD kind of night last night and a full day of it today so what I had planned to do 24 hours ago is finally being done!

Now where was I...?

Oh, that's right I was getting to a point I wanted to make and in the last post I was talking about MY Visit with Our shrink. My visit because as important as it is for me to take care of my families needs if I don't take care of myself too I won't be able to do a thing for anyone.

Parenting special needs children is a 24 hour, 7 day a week commitment and can become a very isolating expereince especially for the primary caregiver which in our case is the stay at home mom--Me.

Parenting a child with emotional and behavioral special needs is even more isolating as by the very nature of these special needs our children can bring unwanted attention to our families. I have accessed every level of service and each deliver just what they can offer which is never everything. I have learned by experience that often when intervention services have been provided and there is nothing more they can offer, they end by pointing at the weakness of the parents as the reason the service didn't provide what was requested in the first place.

My last adventure into services lasted about one year. We were offered the Crisis Level of mental health services offered by our county. The highest level of service provided. We entered this program after our daughter was released from a 3-months stay in a Residential Treatment Center -- RTC. Our only was request was to find and access Respite providers.

We were given "in-home" therapy session most of which were frustrating and set a poor example for the child receiving care. As I believe our Case Manager was at least an hour late for every single meeting and in some cases never showed up or called. It was just a wonderful way to teach a child responsibility to have that child waiting impatiently for the case manager to keep their appointment...

We did have some form of respite during the year. On Saturdays a "person" would come and pick my daughter up and take her out for a couple of hours to have Fun... Which in one way was nice we had a break and could pay attention to little brother--but, it felt a little strange to have someone we don't know and never met before drop by and pick up a little girl with our blessings. Most parents don't just pack a kid into a car of a complete stranger and say, "See you at 2:00! And to be honest I find it hard to understand how this is a good way to provide for a child with RAD Disinhibited type!

This is Not Respite and if it is then It wasn't what we were looking for. To date I have found that no matter how I plan to pay for it, by medicaid or out of my own pocket the RESPITE funds we are receiving in our Adoption Assistance Subsidy are great--But, we have not found a way to spend it!

My hope was to find a way to access people who have a basic understanding of the issues and some relative training that I could call personally and hire to provide a break for our family. Sounds real simple to me. It doesn't exist. Or at least not where I live.

There are multiple ways to hire nanny's, babysitters, and child care providers for any kind of parent. However, children with special needs require care from someone who will not undermine the "system". It isn't possible to find these people in the general ways and one would have thought that an Adoption Assistance Subsidy would pay for services that are specifically available. That is usually how the government funds things--Right?

My conclusion is that these payments being made to us for services that are non-existent makes it possible for the paying state to say they have provided Respite for our family. After all they are giving us money so the service has been provided. They can mark a little check box and report to the federal government that x numbers of dollars have been distributed for the specific service of Respite for the adoptive parents of special needs children.

Their reports all look so nice with all of these dollars going to provide a post adoption support service. The state has done their job as mandated by the federal government under the Adoption and Safe Families Act -- ASFA and everyone has nice paperwork to prove it!

Except who is reporting that they have been paid to provide the service? I want to see where these services are being paid for, and who is providing them and claiming all this adoption assistance subsidy money the state tells the federal government has been paid for the specific need of Respite. I want to see this because I want to pay that person to provide me the respite I can't find to pay for!

We have lots and lots of funding sitting in our bank account right now, paid for by the state for Respite and reported to the federal government as having been provided... We would like to spend that money paying for that service.

Which all leads a parent to wonder what on earth can we do to relieve the non-stop demands for just long enough to remember who we are?

When you start talking like that with your service providers it just gives them more to point out about how the parents are the ones with problems and if they got help the issues would be more manageable. And the Isolation is even more valid for those families.

After awhile it is easy to see several by-products of the pathetic child mental health services programs not only for those who adopt special needs children but, for the ordinary family who may have a special needs child as well. After all when the service does not cause improvement or change then it must be the parents fault. I would guess there are many families living this cycle and those who are not adoptive parents cope and move forward with undermining of their confidence or end up in situations of dealing with child protective services as a family "at risk." We have probabally adopted children who were parents in this situation at one point--maybe, Right?

While many of the adoptive families are standing there saying they have subsidy funds for a service not provided. The services offered don't meet the need and the parents are pointed out as the reason for the problem in the end. Adoptive parents are pushed even deeper into isolation and are enticed by those "fringe" treatment programs and so called experts who offer something that is touted as the only cure and are very happy to accept the adoption assistance subsidy money plus anything else the parents can afford.

It isn't surprising that so many of us eventually find these less then ethical alternatives for treatment that lack any empirical evidence to be considered even acceptable. The problem is that some of these fringe treatment providers are operating on what I believe is a "cult" approach.

In the area of Reactive Attachment Disorder -- RAD, the RAD Cult has been building it's base since the late 1980's. With any cult there needs to be an army of recruiters and the RAD Cult targets the parents to do this dirty work.

In future posts I will be exposing the methods and the tactics that are being used to bring desperate parents to a point they are willing to consider therapy and treatment for children that in many ways and cases is not much more then another form of child abuse. One would ask how a loving adoptive family could actually accept some of these treatments and not see it for what it is... stay tuned as I can tell you how this happens and what is going on in order to accomplish the goals of the RAD Cult.

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