PDD/Autism discussion board

[SueM in MN]

However, most (if not all) states have a waiver. This allows the child to get Medicaid (not SSI) and other services deemed approprate for their disability (ex. respite care hours) without regard to the parents' income.

Only the child's income is looked at for these waivered services. It is available in all states, but the program has different names in different states. (I don't know the name in Michigan, but in Minnesota it's called the TEFRA Program and in Wisconsin, the same program is called the Katie Beckett Program). Children qualify because most of them have little or no income.
DO be aware though that even though the child qualifies because they have no income, in some states, the parents have to pay a co-pay, based on income. In our case, the co-pay was very high, so we cancelled DD's enrollment in the program until she was 18, when the parental co-pay no longer applies.

I think this is a great program, except they seem to think the communication should come from pictures ( which we have as magnets and flashcards, I made a cloth book with all her families pictures)

The picture cards are called
PECS (Picture Exchange Communication Systems) and they are very well known and have had good success with working with children many types of disabilities, but especially with autism. PECS work especially well with children with autism because you don't need eye contact or clearspeech to communicate, and with pictures, anyone (even younger siblings) can understand. Pretty powerful stuff for a child who can't otherwise communicate.
Here's another website with helpful links about PECS
And this site has a good explanation about how/why PECS are useful.

 

[graygables]

my 9yo DD has Asperger's and has a terrible time with clothing. She was approved for "3-5 OT sessions" and just had her 2nd where I was told the next would be her last. : I reminded them of my primary concern...the clothing issues (I have 7 pairs of jeans that cannot be returned and are suddenly 'not comfortable' anymore! ) She mentioned that they "might" work on some "brushing" and that she would note her chart for the next visit to determine if it's "really necessary".

Can anyone tell me what it is and if it works? Is it something I should push for? The last 2 sessions have been *useless* as far as coping strategies goes (they put her on a swing, she loves it, we don't have a therapy swing at home...let's do some REAL LIFE stuff here, please!)

Thanks for putting up with the side-vent. My frustration level is very high right now.

 

[SueM in MN]

my 9yo DD has Asperger's and has a terrible time with clothing. She was approved for "3-5 OT sessions" and just had her 2nd where I was told the next would be her last. : I reminded them of my primary concern...the clothing issues (I have 7 pairs of jeans that cannot be returned and are suddenly 'not comfortable' anymore! ) She mentioned that they "might" work on some "brushing" and that she would note her chart for the next visit to determine if it's "really necessary".

Can anyone tell me what it is and if it works? Is it something I should push for? The last 2 sessions have been *useless* as far as coping strategies goes (they put her on a swing, she loves it, we don't have a therapy swing at home...let's do some REAL LIFE stuff here, please!)

Thanks for putting up with the side-vent. My frustration level is very high right now.

Not all OTs are trained in what is called "Sensory Integration", which brushing is one technique of. If you do a search on www.google.com for "Sensory Integration", you will find lots of information. The OT should be able to give you some things to do at home, or inexpensive equipment you can use at home. Things like a toy called a Sit N Spin or a mini trampoline that the child can sit on and make move rhythmically are aften useful and are not so very big or expensive as actual equipment sold for therapy. (Note: I realize your 9 year is almost surely too big for a sit n spin, but the idea is that there are options that are not expensive therapy equipment). This website, Dragonfly Toys has a lot of suggestions for children with special needs.

Hopefully, you will get some advice from people who have actually used brushing on their child (instead of me, who worked with people who used it on their child).
This site had a good set of forum Q ands As when someone asked about brushing.
One of the points made there is that it needs to be firm pressure. The idea is to de-sensitize someone who is very sensitive to touch and/or textures. If you use light pressure, that is too prone to cause tickling and can actually make someone more sensitive (called "tactilly defensive". Google those words for more information.)
Some of the things I have read about Autism indicate that people with autism crave sensory input (that's why some of the behaviors involve repeated movement or touch). But at the same time as they crave touch, some kinds of touch overload them. Some things (like your jeans example) might not have been overloading when she got them, but now (for example) a combination of the feel of the jeans, plus anxiety over school starting soon, plus who knows what else, just makes the sensory input from those jeans put her over the edge.

 

[thumpersfriend]

My granddaughter is sensitive to touch and taste. The brush is a surgical brush that is soft but must be done with firm pressure. We do her back, arms, palms of her hands, legs. Then the compression comes after that. It is hard for me to explain, I feel pretty inept compared to most of you on this. I just know that the brushing has helped my DGD so much, she is more on an even keel with things now, less meltdowns. They have to be done every 2 hours when she is awake. But we usually do them when she gets a diaper change for now. A lot of the mothers in my DGD's class also do this and have good results. I don't think it is a lifelong thing and maybe only has to be done for a year or so.

 

[mlwear]

The brushing technique is called Wilbarger brushing. If it is helpful then it is a wonderful tool. Many parents find it cumbersome as it really must be done every two hours when the child is awake. This is probably why graygables you have problems. It takes an aide from the classroom to stop everything and spend a few minutes brushing your child. If you are still out on summer break, I would give it a try at home for a week or so and see if it helps. We concluded after trying it different times over different years that it really didn't help. I have heard pretty mixed reviews, but that only makes sense considering how different all kids are. My son does like how it feels, though. It is kind of like getting a gentle massage. We do use brushing in the summer not as intended by the Wilbarger method but more as something to settle him (sort of like a massage). I will take our brush to Disney and will probably need to use it to calm him.
Greygables--you need to request a sensory evaluation from OT. Tell them you want a thorough eval. not just one that asks you to check off items on a list. Then the OT needs to develop a sensory diet to be implemented in the classroom. This "let's try this and that" is ridiculous. They need to target the needs of the child then use appropriate techniques. PM me (include your email address) if you are interested and I can send you a copy of my son's basic sensory diet. It will give you an idea of what to ask for. My son gets a sensory actvitiy of some sort 3 to 4 times per hour. They are very short activities for the most part and are done in the classroom.

 

[tw1nsmom]

There are a lot of things you can do at home that aren't that expensive. We have what seems like the smallest house in the world. In the winter, the therapy equipment takes over our dining room.

We have a mini-trampoline. These can be very inexpensive. Our kids have balance problems, so I bought a regular adult one with a balance bar from Walmart.com. I think it was around $60.

We have scooter boards (these can be stored under a table/couch). $14.95 (Target has them)

Large inflatable bolster for balance, trunk strength, bilateral coordination...I bought this at Walmart for $12.95...look in the Pilates stuff

We put a pull-up bar between the door jams in the hallway. It holds 300 pounds and we use it to hang swings and pullies off of. we just brought in a regular swing from outside. My husband also built a weight system using a bucket with heavy chains in it attached to a rope which is attached to a pully. They pull the rope hand over hand (bilateral coordination) and it helps with upper body strength.

If you have a basement, IKEA has a great canvas swing for about thirty dollars that kids can climg in and feel like they're in a cacoon. You could attach it to a floor joist and it will swing in all directions.

I made heavy pressure stuffed animals by taking two old stuffed animals and cutting them open. I then pulled most of the stuffing out and filled it with rice and sewed them up. They hold them on their lap when they watch T.V. and it gives them the pressure they like. It also helps with strength when they carry them back and forth from their room.

There are lots of other things too. Just stay away from the adaptive equipment websites when it comes to buying things for therapy. Use them for ideas, but try to be creative. If you buy it through them it will cost a fortune. For example, that $12 bolster I bought in the Pilates section would have been at least $50 from a therapy equipment site. The swing system we created would have been between $400 and $700. It cost us around $50.

 

[graygables]

Thanks, all, for the feedback. I forgot to post that we homeschool with a public virtual charter school which is part of the difficulties. The school had to approve the OT which took awhile, although the neurologist had written a prescription for it.

When she had her OT eval, they did determine that she had sensory integration issues and the 2 sessions have been about a "sensory diet"; they gave me the list yesterday of things to do, but they are geared for a classroom and not a home situation, for starters, and nothing on there is helpful to get her wearing jeans. My frustration is that I had some specific concerns and they aren't being addresses. Since we technically have another 3 sessions approved, I guess I'm going to have to push at the next session to do the brushing and to give us some more real-life coping techniques. It just hasn't been as helpful as I had hoped.

The idea of stuffing the animal with rice is brilliant! I will be going to Build a Bear and buying a 'skin' to do that with!

Thank you all for your responses!

 

[SueM in MN]

I made heavy pressure stuffed animals by taking two old stuffed animals and cutting them open. I then pulled most of the stuffing out and filled it with rice and sewed them up. They hold them on their lap when they watch T.V. and it gives them the pressure they like. It also helps with strength when they carry them back and forth from their room.

I saw something at Sam's Club this afternoon that people might be interested in. It was 2 bears (I don't think it was Build A Bear brand, but can't remember the name). Anyway, they were unstuffed bear "skins" that came packaged with stuffing to put in them with and a set of clothing for each bear. They were around 20 inches tall (hard to tell with unstuffed, seated bears) and were under $26 for the 2 of them.

 

[Brightsy]

I recently got a tip from my DSs pre-k teacher. I don't why it never occured to me! ANyways, she said whenever my son starts to get upset or fussy in the class she pulls out a small travel size thing of lotion. She squirts a little on his hands and he calms right down.
So I went and got some and it works!!!
We were out at the Best Buy buying lots of stuff and DS started to fuss. I tried to wait it out a bit at first but he just got worse so I pulled out the lotion and BOOM! HE was all smiles and coos for the rest of the trip.
I knew he liked lotion, it's one of our things we do at home but for some reason I never thought to get a small bottle of it to carry in my purse!

Sara

 

[Nik's Mom]

Sara,
I'm going to have to try that trick. I like that the lotion is simple to carry around.

 

[welovedis]

Here are some links to boards that I visit (other than the DIS, lol!)

http://messageboards.ivillage.com/iv-pspddnos
This is a board for PDD-NOS and Aspergers mostly

http://messageboards.ivillage.com/iv-ppiep
This is a board about IEP, 504 plan and Special Education

http://messageboards.ivillage.com/iv-ppautism
This is the Autism board

http://messageboards.ivillage.com/iv-ppsi
http://messageboards.ivillage.com/iv-pssensoryint
First board is about Sensory Integration, second is about SI disfunction

http://health.groups.yahoo.com/group/AUFTHEWALL/
Yahoo Autism group

http://www.autismchannel.net/cgi-bin/autboard.pl?b=1
Autism message board

http://health.groups.yahoo.com/group/autadvo/
Autism Advocacy group

HTH!

 

[thumpersfriend]

Hi all, this is just an update about my 2 1/2 yo DGD and getting speech therapy financial help. My daughter in law took her to a private speech therapist and she feels she can really be helped. It costs $88 for 45 minutes and thinks 2 days a week would be beneficial. The therapist did not think she could be reimbursed by insurance or any other means she knows of. Daughter in law called insurance and said they would not cover this. Then she tried SS and then the disabilities dept. They made her feel stupid for calling and said to her that she should know it was basically for welfare people. They have a 40l K and a home with some equitity so she said it was useless to try. My daughter in law said it was great to know they were so well off financially, LOL. So it looks like it will be coming out of our pockets for now. She goes back to early on next month and then the preschool this winter so that is good. Thanks for all the advice though. Anyone have any more suggestions?

 

[marj70]

She needs to specifically ask for a deeming waiver (used to be called a Katie Beckett waiver). It only looks a the money the child has, not the parents. It is different than normal medicaid and the application goes through DFACS. The application is long and intrusive and takes awhile, but the payment goes back 3 months PRIOR to the date of application. It does cover in home speech therapy. It is very worth checking out.

 

[thumpersfriend]

Thanks Marj70, what department or agency would she contact for this?

 

[marj70]

In Georgia it is the Department of Families And Children's Services (abbrev DFACS, pronounced DE-facs). It seems like when I called to have the application sent to me, I had to ask for adult medicaid first, then specifically ask for a Deeming Waiver (my son has autism, but no formal diagnosis at the time). I did have to get his dr to fill out a large portion of the paperwork, and his social worker from the early intervention program helped me with most of it.

Sometimes you have to get a letter from SSI stating that you do not qualify for SSI based on your income. They let us skip this step by showing proof of income. If you do an internet search of "deeming waiver" or "katie beckett" you should find several matches.

 

[SueM in MN]

She needs to specifically ask for a deeming waiver (used to be called a Katie Beckett waiver). It only looks a the money the child has, not the parents. It is different than normal medicaid and the application goes through DFACS. The application is long and intrusive and takes awhile, but the payment goes back 3 months PRIOR to the date of application. It does cover in home speech therapy. It is very worth checking out.

I posted this on page 2:

Only the child's income is looked at for these waivered services. It is available in all states, but the program has different names in different states. (I don't know the name in Michigan, but in Minnesota it's called the TEFRA Program and in Wisconsin, the same program is called the Katie Beckett Program). Children qualify because most of them have little or no income.
DO be aware though that even though the child qualifies because they have no income, in some states, the parents have to pay a co-pay, based on income. In our case, the co-pay was very high, so we cancelled DD's enrollment in the program until she was 18, when the parental co-pay no longer applies.

I found this site of resources which lists resources state by state and has some links specific to Michigan.

 

[thumpersfriend]

Thanks SueM in MN- everything seems to be so complicated. I will give this information to my daughter in law. When my granddaughter was first diagnosed at 2 we were so worried about the expense. Then when we found early on and they said everything is covered for her education and we were so relieved. Now it seems that it is so difficult to get any assistance. The thing that bothers me most is so many are saying that it is most important to get speech therapy help before they are 3! Maybe we need to relax and just pay for the private therapy ( just will have to raid my special Disney fund). It would be so worth it though if it helped! I don't have alot of money ,but I have to help my granddaughter all I can. I love this board though and get so much information in so many things . Thanks everyone.

 

[SueM in MN]

T The thing that bothers me most is so many are saying that it is most important to get speech therapy help before they are 3!

You do the best you can.
Before 3 might be better than after 3, but kids are very resilient and after 3 is still going to help her.

For the waivered services, it is confusing. I was a Public Health Nurse for a number of years, so I was used to working with services and helping people find them....
And I found it confusing and intimidating. I had trouble from my first contacts with the agency that handles the waivers in Minnesota (here, you basically are applying to the County for enrollment in Medicaid). I knew there was a copay and that based on our income, we would probably have to pay something, but no one would answer my questions about what the copay was at what income level. We went thru the whole process and then found out the copay was very high for our income level.

 

[thumpersfriend]

SueM in MN- after she starts preschool at 3 and is going 4 days a week do they have more speech therapists there to help her or do you think we will have to continue with private therapists? Thanks.

 

[taximomfor4]

Two questions:
My 7yo dd, already mentioned her many times on this board...Sensory Integration Dysfunction, gross + fine motor delay, poor motor planning, balance issues but VERY intelligent and verbal -- every time we get her anywhere where there is activity going on...stores, restaurants, ANYWHERE -- she picks her fingernail. Nonstop. The same nail. Even while doing what she needs to (walking, moving up in line, ordering her dinner, etc). Is this common? I know we are not doctors here, but wondering if this is usually part of SID (like self-soothing or re-focusing) or something else needs to be looked at.

My 5yo ds, similarly, has for about 2 yrs now CONSTANTLY pulled at the neckline of his shirts. It sounds funny, I know. And we used to think it bothered him (tags or something) but it is EVERY shirt. He can be totally over-engrossed in a video game, but crash his guy while pulling the neckline again. He completely warps his shirts. He does this with every material, every size, every shape shirt. Ped didn't listen at all when I first mentioned it about a month after it started...said 3yo's often do repetitive behaviors. I am just starting to think maybe it should have worn off a bit by 5 1/2 yrs old? He, too, is apparently quite intelligent (though his preschool teacher is a bit worried because his mind drifts off into way-distant tangents and he misses information). He is very verbal, actually never shuts up...pronounces many letters wrong (most consonents are W's) but nobody is worried about that till age 8.

Anyone have any insight for me?

Beth