Rural Wyoming and ABA

[tacomaranch]

I am getting ready to sign a contract to start a home ABA program for our autistic 3 yr old son, Hunter. He is mild and has no self injury issues, he has excellent eye contact but bad speech and no understanding of logical consequences.

I can't get any help from the local Child Developement Center and there is nothing around.

My question, what is reasonable to pay a Dr. for consulation and a autism specialist for setting up the program?

I really don't want to sell a part of the family farm as we are 3 rd generation to own it. But they want so much money!

Thanks for letting me know you story and your thoughts, April

 

[1stluvispooh]

April, What is your insurance situation like? I would hate to see you sell the farm (Hubby's family has a farm) or go into major debet. If you can't get it paid for going through as a medical claim you might want to try and get it paid by the mental health part of your insurance. (My medical and mental health insurance though through the same company are different accounts) You might want to check with your local reginal health district for some help with this issue as well. Good luck Yvonne

 

[spotdog]

Tacomaranch, does your School District have any programs for 3-4 year olds with developmental challenges? Headstart or early Special Education may be available at no cost.

 

[tacomaranch]

We just finished our battle with the Child Development Center in Thayne. It was our advocate and representitive from the Parent Information center and the director of Hunter's private preschool.

We walked away with 1 hour of OT and speech theraphy once a week, to be served at the same time.

We also were given a referral for a counselor. I saw her and she said she wants to see my DH and I rather than Hunter.

So once again, do we pay over 10K for 3 months?

Thanks, April

 

[LMC]

I googled "childrens early intervention services in Wyoming" and found this site:

www.kidsource.com/kidsource/content2/preschool_services.html

If you go down to the "preschool" section of this site it states something about if a state received federal funding for XXXX then they must provide preschool services for disabled preschool children ages 3-5. I think autism is classified as a disability. It also lists the Depart of Health and Social Services in Wyoming (307.777.7115) as a source of information.

You can do a google and see what all pops up to get more info. Hope this helps. And they should be providing for him at no charge! If they don't have a public school setting in your community, then they can place him at their expense in a private school or a preschool.

 

[tacomaranch]

Thanks for the great link.

Here is the problem. I want a behavior management program. The CDC doesn't offer that program but also to passify me, sent us to a counselor to develop a behavior management program. I want ABA, TEECH and anything else that is intensive behavior management as it has proven to give great outcomes when applied intesively, over 30 hours a week and for a long term.

ABA is scientifically proven and accpetable but I still can't get it other than pay for it. It is offered in the elementary school but that is 3 years off and I want to help Hunter now.

Unfortunately, I live in very rural Wyoming with no support or program. Out here they have the LDS Church, but I am not LDS!!! God is not going to solve this one I must solve it.

Urg. I am just so mad!

 

[BlindTyldak]

Do you have a county Human Service Agency? I know we have them in South Dakota, but I'm not sure how widespread they are. If they don't have any specific programs that can help your son, they very well might have something that could help offset private financing. I also heard that in Nebraska they had several programs in place - including medical defrayment - to help people offset major expenses so they would not lose family farms, you may want to check with your local Farm Bureau as well and see if Wyoming has anything in place, even if its just a no-interest loan. Wish I could be of more help.

 

[spotdog]

Living in a large city, I admit that I don't know much about family and educational support in rural communities. It does seem wrong (even to a city person) that you should have to lose part of your farm, which is how you support your family, to pay for your little son's medical or educational needs.

Hang in there.

 

[LMC]

I know how frustrated you are ( I can tell by your posts). I can relate, my son has a rare genetic disorder and since people haven't heard of it, it doesn't exist so he doesn't need services. Anyway, you stated that the treatment you seek is very expensive which means you will have to fight very hard to get it. I still believe that since Cam was involved in early intervention that the school system is still responsible in his care/well being. AND, if they offer the services you seek in the school system then those services should be made available to him. Do all the research you can, go to Wrightslaw to see what info you can gleen to help you when you approach the goons at the school system again. Check with your sons doctors to get in touch with some autism support groups, even if they are not in your immediate area, and maybe some of those parents have already done some of this leg work. Cam's doctor should be one of your best advocates. I know our neurologist is willing to go to school meetings if need be.

 

[tacomaranch]

I just want to thank everyone for the support. Living out here is wonderful. We don't lock our doors, there are no rules, I have a fire pit, a pond, we shoot guns in our backyard, we have ducks and wildlife land and we have fishing in our own creek. Our food comes from elk, deer, moose, duck, geese and always fresh eggs. We do have a wonderful life and I thank God. What we don't have is any resources when life throws a curve ball. I can't change the system now, but I am not going to give up. If it takes me fighting for years, I can make a change. Unfortunately, it won't help my son but it will make it so that the next parent won't have to fight.

For now, anyone want to buy 5 acres of paradise?

Thank you for the support! April

 

[tacomaranch]

I forgot to add that the DH is starting a new job after driving 600 miles a week for over 2 years now. He is starting with the local school district on the 31. We will get insurance from the school district and I can't wait to see if it will cover ABA.

He will be home for 2 hours more each day and be available to go to his son's school functions. We are excited and he also got a raise from his current salalry.

Just wanted to share the joy.

 

[BlindTyldak]

That's excellent news! Good luck on the insurance, I hope everything works out for you!

 

[tacomaranch]

Thanks for good wishes.

Today we got an email from Dr. Higbee of USU Autism saying get the contract signed by the 31st or forget it. I just don't know where to find the money. I can take it out of my life savings but it is over half of what I have and if something happens to my DH or DS or me, that is all I have.

What to do?

 

[LMC]

I personally don't like being "pressured" into signing contracts of these types when I just have not made up my mind. I just have to have the attitude of "if it's meant to be it will work out". For instance, say June 20th you decide you want to do this, then if it was meant to be they will have availability for you. This is a huge financial committment (I know you have a huge committment to your son too) but being put on the time frame of sign it or forget it doesn't sit well with me. I know they have other potential clients, which is fine, that's why I live by the "if it is meant to be" attitude. I remember going to a vision therapist once for a consult and she wanted me to plop down 3K right there for 6 weeks of therapy. Well I knew nothing of the therapy other than what she just told me so I wanted to check it out with the neuro, pediatrician, developmental neuro psych, etc. The vision therapy office didn't like my response but I didn't like their trying to pressure me into signing a contract before leaving and before I had more info.

Something else you might consider would be to get the text books that the colleges use to teach this material. You could use those at home to develop your own home therapy program for minimal cost. Your neurologist or developmental neurologist (if you have one but not the one wanting you to sign a 10K contract) may be able to give you the names of some students who are studing in this field who would be willing to work with your son for a fraction of the cost. Our developmental neuro psych is willing to put us in touch with some psychologist so my child can have free services for his needs since the doctor does not like the psychology group that my insurance company will cover. Just keep those wheels turning and you'll come up with something. I still can't understand why the school system won't service him if this is something they will provide starting in K5. It's like shooting themselves in the foot to not have him prepared.

 

[Mickey'snewestfan]

As a special educator who works with young children I have a couple of thoughts. One is that, if you can find a way to provide intensive treatment for your son I think you should. The school I work at serves kids from a wide range of families. We have some kids who get a lot of outside services, and others who get very little. The difference in how much progress a child makes can be huge. While I agree 100% that your school system should be providing these services, or your insurance company, I think that waiting until that battle is fought is too risky for your child. If you can afford to intervene intensively I'd say go for it.

As far as whether 10K is reasonable -- that would depend on what they're going to do. Does 10K cover the actual treatment (e.g. paying the therapists who come into your home?) or just setting it up -- if they don't pay the therapists will they find and train them? For how long does the contract last. If the 10K doesn't include the actual treatment then you need to think about whether you can afford to pay for therapists on top of that. If you can't then it may be more cost effective to spend that money on some kind of parent education that would train you in state of the art methods for working with him yourself.

Finally, about them pressuring, I'd ask for clarification as to why. I know here that there are some fantastic professionals who work with only a small number of kids at a time. When a space does come available they will offer it to someone, but they'll want an answer pretty quickly so that they can move on. If that's the case here then that's understandable. On the other hand if this is some kind of "limited time offer" as a way to pressure you to make a decision before you're ready than I think that's crummy and a sign that they're not as ethical as you might want.

 

[tacomaranch]

Good Morning Friends,

Here is the final outcome after a long nite with the DH.

He is going to pay Dr. Higbee for his services which I have problems with the contract, like why do we pay for phone consultion when we are paying him to consult? $4K

I am paying the local autism person who works at the school district but Hunter is 3 and not in school and the CDC doesn't offer ABA. $5K

We have 2 college students hired and few kids from the area to help us. We will learn how to run the ABA and learn quick. After 3 months we are on our own, but we will know how to record data, interpert data, how to adjust ABA for Hunter's needs.

The factor that made me sign was just as the last post said, this is our chance to change the outcome. I don't know if we can put this together again, but right now it ready to go, I just had to sign....so I did.

I will keep everyone informed of how our program goes. Anyone want a piece of farm land in beautiful star valley, Wyoming?

April