Blind woman w/asperger's needs help.

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I found this article in my local paper. While I don't have AS a close friend of mine does & has recently gone through some tramatic detal work herself. Fortunately she was able to afford it & I was able to go with her for support. The woman in this story really seems to be in a tight spot though;

http://www.missoulian.com/news/local/ar ... 03286.html

For those who don't like to go to links here is the story.

Heather Stone collects leaves earlier this week at a home where she and some volunteers raked leaves to help Stone raise money to have dental work done. Stone has raised $41 so far toward a $12,000 visit. For most people, raking leaves is just another household chore. Heather Stone, on the other hand, genuinely enjoys the work.

Lately, she's been enjoying it a lot, in fact, raking upward of three lawns each week, sometimes well past dark, in exchange for a couple of bucks or a hot meal.

But despite her cheery demeanor, Stone probably has more reasons to hate raking leaves than anyone.

Stone, 33, is blind and autistic, and in recent weeks has used leaf raking as a way to earn enough money to go somewhere she absolutely despises: the dentist.

Stone hasn't seen a dentist in more than a decade. Twelve years ago, the last time she sat in a dentist's chair, a team of medical professionals physically restrained Stone in order to perform the necessary care, disregarding her cries for help when the numbing agent wasn't strong enough. Stone felt everything, and afterward, vowed never to return.

Since then, Stone has gone to great lengths to care for her teeth, brushing three times daily for exactly two minutes and swishing with anti-plaque and anti-cavity mouthwash for exactly a minute and 30 seconds each day. (She counts the length of time in her head.)

Still, today, Stone has nine cavities and five teeth that need pulling. The dental visit will require hospitalization - a visit that will cost $12,000.

That's a problem for someone who's poor and on Medicaid. Many dentists don't accept the government health insurance.

So, in order to stop the excruciating pain that now pulses from her mouth to her ear, Stone has resorted to raising money the only way she knows how: raking leaves.

Dental care is among the biggest problems for people with developmental disabilities, said Deborah Swingley, executive director of the Montana Council on Developmental Disability, a nonprofit advocacy group. Most folks with a developmental disability receive Medicaid. But few dentists accept Medicaid patients because the reimbursement rate from the government is low, Swingley said.

"Many folks with disabilities have to be put in the hospital and be sedated to get dental work done," she said. "For those folks, (going to the dentist is) a much more traumatic, terrifying experience."

Stone chews her food on the right side of her mouth. Cold air bothers her teeth, she said. Recently, the pain has begun to move toward her ear. She rinses her mouth with salt water because she says it helps with the pain.

For six years, four of them in Missoula, Stone has lived on her own.

She has no family contact or support. Stone is a high-functioning person with autism, but her black-and-white view of the world makes her disability more pronounced. She hates loud noises and people touching her. She takes everything literally, which, for example, is why she swishes with anti-plaque for exactly a minute each day. It's what the directions say on the back of the bottle.

When she was little, people tried to teach her how to floss, but no one could explain it well enough for Stone to understand. Everyone wanted to show her how to floss, but that doesn't work with someone who can't see.

Several months ago, after reading a story in the Missoulian about a new club forming for young adults with autism and Asperger's syndrome, Stone started attending the Neuro Networking Club meetings. Treva Bittinger, a UM student and mother of an autistic child, organizes activities with help from the UM women's Betterside rugby club.

With support from friends in the club, Stone agreed to at least go for a dentist consultation.

"All they do is hurt you," said Stone one recent afternoon at Bittinger's house. "I hate people touching me. I'd rather all my teeth fall out."

For three days before the consultation, Stone didn't sleep. On the day of the appointment, Stone wore a 20-pound vest.

"It makes me feel secure," she said.

Stone sat in the waiting room gripping her teddy bear and rocking back and forth.

She is not the worst dental phobic Dr. Rowan McQuarrie has ever encountered. Once the local dentist did a consultation through the door of a car so the patient could step on the gas and speed away at any time.

For many autistic people, "oral conscious" sedation drugs, like laughing gas, cause a paradoxical reaction, McQuarrie said. What's supposed to make them loopy and relaxed will agitate them.

"If you can't invade their space, if they don't like to be touched or have instruments around them and you can't use oral conscious sedation, well, you have very little choices," he said. "I've had some patients that I have been able to cajole, but the vast majority require a general anesthetic. In Heather's case, that's her only choice."

The idea of being asleep for the dental procedure puts Stone at ease.

"They'll put me to sleep like a dog is put to sleep when they have surgery," said Stone, who loves canines and trains rescued dogs.

Stone however lives off an $800-a-month Social Security disability check, and the dentist doesn't accept Medicaid.

So she's saving her leaf-raking money for the surgery. She's earned $41 so far, and keeps it in a piggybank.

Over the past years, Stone has been diligent in her efforts to maintain employment, but said she has either been harassed, taken advantage of or criticized for working too slowly. Eventually, she quits or is fired.

Stone was forced to quit her last job because the government took away so many of her benefits once she found employment that she made less money having a job than not.

"I took a lot of graveyard shifts because you get an extra dollar," she said.

While McQuarrie is sympathetic to Stone's situation, at some point you have to require payment, he said. Many dentists in town offer reduced or free services. In McQuarrie's case, he does a lot for Native Americans in need of dental work. Others in his office provide reduced-cost services to veterans.

Stone's situation represents the problems with today's health care system, McQuarrie said.

"For people like Heather, the door just gets slammed," he said. "That's not right."

So Stone and her friends in the Neuro Networking Club are raking leaves and pinching pennies to raise money so Stone can go the dentist in May.

This Saturday, Nov. 7, is the club's fundraising day, where members of the UM women's rugby team are teaming up with the Neuro Networking Club to rake leaves.

They are also asking local businesses to donate items to create gift baskets, which will be placed in stores around Missoula beginning next week. The baskets will be auctioned off in a silent auction to the highest bidder.

Anyone interested in having their lawn raked in exchange for a donation should contact Bittinger at [email protected], or by phone at 543-0003.

Anyone interested in sending a donation should make checks payable to the Neuro Networking Club and mailed to Phoebe Hunter, ASUM Office Manager, University Center 105, 32 Campus Drive, UM, Missoula, MT 59812. All donations will go to Stone's dental bill.

Reporter Chelsi Moy can be reached at 523-5260 or at [email protected].

That's very sad, I had a terrible time of going to the dentist when I was a kid. I was terrified, and I don't feel like the dentist handled me very well. I cried and screamed and all they did was restrain me and treat me like a bratty kid. I was simply terrified. I usually go to the dentist about once every 3 years now, thank god my teeth have been healthy thus far I wish I had a suggestion, I would've thought that with medicaid she could get the proper care. I was on medicaid when I was a kid and I got the dental work I needed, except for braces which I was brave enough to get later.

I never had a problem with the dentists except one of the times they gave me a shot in my mouth and it hurt like heck. I screamed and I scared two kids in the waiting room. One thing I hate about them is them taking x rays of my teeth when I was new and it took a while. It was boring and I don't really like having to have those things in my mouth. Sometimes being in the chair can be boring if the procedure is taking too long. You are just lying there and having to stay in a certain position and then your body gets numbed because you can't move it. Then you keep being told to hold your head still.

I HATE arrogant doctors and dentists! When I was 2 and a half I needed some sort of surgery, but didn't like the anesthetic mask and breathing the gas. So what did the doc do? He brought in SIX nurses to pin me to the operating table long enough for me to become knocked out. Apparently he never thought of using injected anesthetic. My mom was appalled about how casual he was about it. "Yeah, we had to use six people to pin the little brat to the table so we could knock him out." My mom never took me back to him ever again. Some doctors just want to do their work, and if that means holding the patient to the table/chair by force, that's what they will do. Dental drilling is EXTREMELY painful, and forging ahead with drilling when the patient is not sufficiently numb, just so the dentist can get on with his day, is abusive. Some of those people seem to think that their expensive educations make them inherently superior to their patients.

It seems that would make sense, but there are soooo few places that actually take it-dentistry, psychiatry, and even doctors are hard to find with medicaid anymore. In my area, there are a total of 2 doctors I can choose from that take medicaid... and both are TERRIBLE doctors.

I finally had to switch to one that family pays for, because the other kept sending me home with infections, and would do things like not refill my Prozac or give refills on it... which would make sense except he was so incredibly booked I was having to wait 3 months just to get in to get my prescription for a refill from him. 1 month on, 2 months off didn't exactly work well with anti-depressants. He also tried me on other meds for anxiety and sleep, but he'd only give me 6 pills until my next appointment. It was awful.

The problem, apparently, is the government doesn't pay the doctors over half the time, so everyone just refuses to take it... which leaves us screwed essentially.

I'm sure a lot of docs and such won't take it too, because medicaid won't cover a lot of treatments needed. When my doctor upped my Prozac the first time, Medicaid argued it and denied it twice before the doctor finally got them to do it. Since then they have given us crap about it 3-4 times, randomly denying it. Why? They want me to be on 20 mg rather than 40 mg a day. Apparently the workers at Medicaid know all about my health or want to think they do....

When my daughter was in the hospital, we met another mother who was just sobbing outside... I asked her what was wrong. Medicaid would not cover her son's MRI-he had epilepsy, and they would not cover an MRI for the kid... he was in the hospital because his seizures had gotten so bad.

We had a clinic in the last place I lived that had a dentistry that would take medicaid, but it was a 3 year waiting list to even get an appointment because they had so many people needing to go there... and 3 years was the wait for EMERGENCY care, lol. It is really bad.

I hate the dentist. The smells, the sounds, and worst of all, some big face looming close and breathing on me, and hands touching my mouth.
My last experience was diabolical. I was meant to have some fillings done over a period of time, but I had a phobia of dental pain.
Some german dentist decided that he would just do all of the fillings in one go and he did nothing. He didnt numb my mouth, no sedation. He did a row of drilling with nothing at all and the agony was the worst I have ever felt. I didnt dare say anything, and well, it totally has made my phobia worse.