LIST AHA-AS-PDD Digest 713

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Digest Number 713

There are 3 messages in this issue.

Topics in this digest:

1. N.J. plans to shift more early autism expenses to parents

From: Pat Schissel

2. Siblings of autistic children need to be kept in the loop too.

From: Pat Schissel

3. NIH - PRESCHOOLERS WITH ADHD IMPROVE WITH LOW DOSES OF MEDICATION

From: Pat Schissel

Messages

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1. N.J. plans to shift more early autism expenses to parents

Posted by: " Pat Schissel " pats@... patriciars11577

Date: Sun Oct 15, 2006 8:03 am (PDT)

Fyi

N.J. plans to shift more early autism expenses to parents

Sunday, October 15, 2006

By LINDY WASHBURN

STAFF WRITER

For children with developmental delays, early recognition and quick help can

make a lifetime of difference. But the state is proposing that some families

pay thousands more for that help because the rising number of children in

need have overwhelmed the budget.

Some parents worry the plan could force them to cut back on early

intervention services for their children.

" We would not be able to afford to pay it, " said Tara Banuls, a North

Arlington resident who has two children with autism.

" No one's thinking about the future, " Banuls said. " It's going to cost more

to educate the children if they don't get this jump-start because they're

going to be further behind. "

State officials say the government has been very generous, even as federal

funding has failed to keep pace with the need. Parents, they say, must help

out more.

No one disagrees that early intervention by experts in behavior, speech and

occupational therapy can dramatically improve a child's potential. Early in

life, the brain can create new con-nections, in some cases almost rewiring

itself to compensate for a disorder. Intervention can help a child

communicate and learn -- not only improving the child's life, but reducing

the need for special education and other services in the future.

" I couldn't even fathom what my daughter would have been like without it, "

said Weiss, of his daughter, Tai. She has a disorder on the autism

spectrum and entered preschool in September.

" She's a different child, " he said. She even greets him when he comes home

now, where before she was oblivious.

The federal government mandates that states offer early intervention

services for infants and toddlers -- from birth to age 3 -- with

disabilities. The services are provided not only to children with autism,

but to those with hearing impairments, mental retardation, cerebral palsy

and a variety of other disorders that cause their development to fall

behind.

The federal government provides some funds, with states and families making

up the rest.

The problem is the need and cost have escalated dramatically.

Double the number of children -- 13,788 -- were referred to the New Jersey

program in fiscal 2006, which ended June 30, compared with six years

earlier. Each child referred is evaluated. As of July, 8,815 children --

including 932 in Bergen and 493 in Passaic -- were receiving services.

At the same time, the cost of services has increased to an average of $100

an hour. This year, the Legislature allocated $78 million, up from $22

million in 2000. But even with the budget increase, officials are

anticipating a $13 million shortfall.

" The governor and the Legislature have been very generous in providing

resources over the years for this program, far beyond what the federal

government has, " said Dr. Eddy Bresnitz, deputy state health commissioner.

To help close the budget gap, lawmakers have directed that the share paid by

families be doubled to $6 million a year.

" The state is not the only funding resource for families, " Bresnitz said.

" The families have to participate, as well. Those who can, should

contribute. "

The proposal has provoked fear in the hearts of parents who consider the

services essential to their child's future. Because the amount a family must

pay will be on a sliding scale pegged to their income, the middle class will

be affected the most.

" I understand why they need to do it, " said Weiss, a Bergen County attorney.

He recently learned that his 22-month-old son also has a disorder on the

autism spectrum. Weiss hopes his son Drew will benefit as much from services

as his daughter did.

" We started him in July, at 16 months, " Weiss said, after one of his

daughter's therapists noticed that Drew was not responding to his own name.

Weiss and his wife noticed an immediate difference after the services began.

" Now he'll make eye contact, " Weiss said.

But when he looked at details of the state's proposal, he saw that he would

be asked to pay five times as much for those services.

Cheryl McGee of East Rutherford said her contribution for services for her

son, ph, would jump from $418 a month to $1,900. He receives 25 hours of

therapy a week for autism.

" Yes, we're blessed we have good jobs and make good money, " she said. " But a

situation like what might happen will cripple us. "

Tara Banuls, the North Arlington mother of two, said that if she were asked

to increase the contribution for her 2½-year-old daughter, " She would not

get services. "

Her little girl, Bella, receives 14 hours of behavior, occupational and

speech therapy a week. Her son, Tyler, 6, was diagnosed too late to be

eligible for early intervention. As a result, Banuls said, the two are at

nearly the same developmental stage.

" Families with the most intensive needs may decide to lessen their service

requests because they do not wish to pay for services, " said a statement

from the Early Intervention Coalition, which represents agencies that

provide services for half of the families served by the program. That

" unintended consequence " of increased family contributions would actually

lead to higher costs down the line, as more services are needed.

Two public hearings were held on the proposal last week; 13 families and

five advocacy organizations testified. But McGee, one of the mothers who

spoke, said she thought more would have attended if they had received

information about the hearings.

The state Health Department is accepting comments on the proposal through

the end of October.

Bresnitz says more than half of the families whose children receive early

intervention will not be affected by the proposal, because their income is

less than $70,000 a year for a family of four.

The average child in early intervention, he added, receives about three

hours a week of therapy. For a family whose child receives 10 hours a month,

the contribution would jump from $115 per month to $310.

The proposed increases require parents to pay a percentage, which increases

with income, of the cost of services. When family income reaches $221,000 a

year, the family contribution would be 100 percent -- except that the total

is capped at 10 percent of income.

Children with autism or hearing impairments can easily rack up service costs

of more than $100,000 a year. Those with other problems in speech or

behavior can require $15,000 to $20,000 a year of services.

This year, the family contribution for early intervention services ranged

from $10 to nearly $3,000 a month, a spokeswoman for the Health Department

said.

The end result of the proposal, say autism advocates, is that families in

higher-income areas, such as Bergen County, and with children who need more

therapy, such as autistic children, will be hit the hardest.

" We believe that kids with autism are the ones who are going to suffer the

most in this, " said Art Ball, the director of government affairs for the New

Jersey Center for Outreach and Services for the Autism Community (COSAC),

and the father of a child with autism.

" If they want me to pay a little more, I don't have a problem. But don't

take me from $800 a year [in contributions] to $10,400 a year, which I

absolutely can't afford. Don't bankrupt me. Don't make me choose. "

E-mail: washburn@...

* * *

Voice your opinion

The state is accepting written comments on the proposed increases in family

contributions for early intervention. They can be sent to:

Terry on, Part C coordinator

New Jersey Early Intervention System

P.O. Box 364

50 East State St.

Trenton, NJ 08625-0364

Email: Terry.on@...

Fax:

The comments should include: Name, title, address and telephone number,

concerns or support about the proposal, and recommendations.

Pat

R. Schissel, President

AHA/ Asperger Syndrome and High Functioning Autism Association

phone

fax

PatS@...

www.ahaNY.org

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________________________________________________________________________

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2. Siblings of autistic children need to be kept in the loop too.

Posted by: " Pat Schissel " pats@... patriciars11577

Date: Mon Oct 16, 2006 5:37 am (PDT)

Fyi

Don't forget about me

October 16, 2006

Siblings of autistic children need to be kept in the loop too, says Margaret

Cook.

WHAT'S the most embarrassing thing your brother or sister has done? For

children with an autistic sibling, it can include yelling, hitting and

kicking, grabbing other people's food, making strange noises or even

undressing in public.

Often children don't understand their sibling's unusual behaviour and feel

angry, frustrated and embarrassed, says psychologist Athanasia Koutsis.

However, they may not be able or willing to tell parents about their

concerns. "

The nature of any disability is that parents have to spend a lot of time

with that child and often the others miss out on attention, " she says.

" Siblings are very aware of the burden and stresses on their parents and are

reluctant to add to them. "

An estimated 30,000 children and young people in Australia have autism

spectrum disorders to different degrees. It affects their social interaction

(lack of empathy or understanding of others), communication, behaviour

(restricted interests and repetitive behaviour) and sensory perception

(under or over-sensitivity to sight, touch, taste, sound, smell, temperature

and pain). It is four times more likely in boys than girls.

Ms Koutsis says research has found that families with children with autism

experience greater stress than those with any other disability.

She and special education teacher Gerda De Clercq have written What About

Me?, a " survival guide " for siblings, illustrated by Galbraith.

It includes real-life quotes from siblings, with some involved in the

editing to ensure the information is realistic. Both authors have extensive

experience in the field.

Often children are very protective of a sibling who has autism, says Ms

Koutsis. However, they may also feel responsible for them, with some

worrying " will I have to look after them when mum and dad aren't around " .

Parents may be pleased that their child is being so caring and empathetic

but not realise the pressures on them.

For example, it can be difficult having friends over to play (one girl told

Ms Koutsis of her embarrassment when a friend said she didn't want to come

to her house " because I'm scared of your brother " ) or to go out as a family.

Children with autism may also have trouble making friends, understanding and

expressing emotions, understanding what has been said, sharing, taking turns

and coping with change. "

(In the book) we've tried to acknowledge that it can be very difficult for

siblings and that it's OK to feel angry and frustrated, " says Ms Koutsis.

" It's about helping them have a better relationship, and also creating

opportunities for communication between them and their parents. "

For example, some parents say " you shouldn't get angry, he has a disability "

or " you should love him, he's your brother " . But it's important that they

acknowledge their children's feelings. "

What About Me? is targeted at primary and early-secondary school children,

but Ms Koutsis says it's also suitable for families and schools with

children with autism integrated into classes. "

Parents have said they didn't realise it was OK to say (to their other

children) 'Yes, I was embarrassed by that behaviour, too', or to set aside a

quiet space just for them. Grandparents have said that they'd needed a

simple explanation about what was going on. "

What About Me? is published by Wantirna Heights School, which provides

programs for children with autism. Details: 9720 7492, HYPERLINK

" mailto:wantirna.heights.sch@... " wantirna.heights.sch@...\

..gov.au

Survival tips for siblings

- Give him a favourite toy to keep him off your back.

- Take a deep breath and count to 10.

- Tell an adult if he/she has hurt you.

- Tune out - put on your earphones and turn up the music.

- Talk to your mum and dad about how you feel.

- Find a hiding place for your treasured possessions.

- Set up a favourite place where you can be alone.

- Ask your parents to spend special time alone with you each week.

Talking to a child with autism

- Make sure you have his/her attention and use his name.

- Speak clearly.

- Keep it short and simple.

- Write or draw a simple picture to help him/her understand.

LINKS

HYPERLINK " http://www.autismvictoria.org.au " \nautismvictoria.org.au

HYPERLINK " http://www.aspect.org.au " \naspect.org.au

HYPERLINK " http://www.autismaus.com.au/aca/ " \nautismaus.com.au/aca/

HYPERLINK " http://tinyurl.com/ycqp4s " http://tinyurl.com/ycqp4s

Pat

R. Schissel, President

AHA/ Asperger Syndrome and High Functioning Autism Association

phone

fax

PatS@...

www.ahaNY.org

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________________________________________________________________________

3. NIH - PRESCHOOLERS WITH ADHD IMPROVE WITH LOW DOSES OF MEDICATION

Posted by: " Pat Schissel " pats@... patriciars11577

Date: Mon Oct 16, 2006 10:28 am (PDT)

Fyi

U.S. Department of Health and Human Services NATIONAL INSTITUTES OF HEALTH

NIH News National Institute of Mental Health (NIMH) <HYPERLINK

" http://www.nimh.nih.gov/ " http://www.nimh.nih.gov/>

FOR IMMEDIATE RELEASE: Monday, October 16, 2006

CONTACT: Colleen Labbe, NIMH Press Office, ,

PRESCHOOLERS WITH ADHD IMPROVE WITH LOW DOSES OF MEDICATION

The first long-term, large-scale study designed to determine the safety and

effectiveness of treating preschoolers who have attention

deficit/hyperactivity disorder (ADHD) with methylphenidate (Ritalin) has

found that overall, low doses of this medication are effective and safe.

However, the study found that children this age are more sensitive than

older children to the medication's side effects and therefore should be

closely monitored. The 70-week, six-site study was funded by the National

Institutes of Health's National Institute of Mental Health

(NIMH) and was described in several articles in the November 2006 issue of

the " Journal of the American Academy of Child and Adolescent Psychiatry. "

" The Preschool ADHD Treatment Study, or PATS, provides us with the best

information to date about treating very young children diagnosed with ADHD, "

said NIMH Director R. Insel, MD. " The results show that preschoolers

may benefit from low doses of medication when it is closely monitored, but

the positive effects are less evident and side-effects are somewhat greater

than previous reports in older children. "

Methylphenidate is the most commonly prescribed medication to treat children

diagnosed with ADHD. But its use for children younger than 6 years has not

been approved by the Food and Drug Administration. And until PATS, very few

studies -- and no large-scale ones -- have been conducted to collect

reliable, consistent data to help guide practitioners treating preschoolers

with ADHD.

The 303 preschoolers enrolled in the study ranged in age from 3 to 5 years.

The children and their parents participated in a pre-trial, 10-week

behavioral therapy and training course. Only those children with the most

extreme ADHD symptoms who did not improve after the behavioral therapy

course and whose parents agreed to have them treated with medication were

included in the medication study. In the first part of the medication study,

the children took a range of doses from a very low amount of 3.75 mg daily

of methylphenidate, administered in three equal doses, up to 22.5 mg/day. By

comparison, doses for school-aged children usually range from 15 to 50 mg

total daily.

The study then compared the effectiveness of methylphenidate to placebo.

It found that the children taking methylphenidate had a more marked

reduction of their ADHD symptoms compared to children taking a placebo, and

that different children responded best to different doses.

" The best dose to reduce ADHD symptoms varied substantially among the

children, but the average across the whole group was as low as 14 mg per

day, " said lead author ce Greenhill, M.D., of Columbia University/New

York State Psychiatric Institute. " Preschoolers with ADHD may need only a

low dose of methylphenidate initially, but they may need to take a higher

dose later on to maintain the drug's effectiveness. "

To ensure the safety of the very young children involved, the study was

governed by a strict set of ethical standards and additional review boards.

The children's health was monitored carefully and repeatedly throughout the

study's duration. Their parents were repeatedly consulted for consent prior

to every step of the program. The researchers also reviewed the teacher

ratings of the children who attended preschool at various stages in the

study.

Similar to 1999 results found in NIMH's Multimodal Treatment Study of

Children with ADHD <MTA study:

HYPERLINK

" http://www.nimh.nih.gov/childhp/mtaqa.cfm " http://www.nimh.nih.gov/childhp/mtaqa\

..cfm>.,

and other studies on school-aged children, the medication did appear to slow

the preschoolers' growth rates. Throughout the duration of the study, the

children grew about half an inch less in height and weighed about 3 pounds

less than expected, based on average growth rates established prior to the

study.

Currently, no data exist that track long-term growth rate changes among

preschoolers with ADHD who are medicated with methylphenidate. However, a

five-year-long follow-up study is underway to track the children's physical,

cognitive, and behavioral development, as well as health care services the

family is using to care for the child. Those data will be

available in two to three years.

Finally, 89 percent of the children tolerated the drug well, but 11

percent -- about 1 in 10 children -- had to drop out of the study as a

result of intolerable side effects. For example, while some children lost

weight, weight loss of 10 percent or more of the child's baseline weight was

considered a severe enough side effect for the investigators to discontinue

the medication. Other side effects included insomnia, loss of appetite, mood

disturbances such as feeling nervous or worried, and skin-picking behaviors.

Despite concerns that stimulants may increase blood pressure or pulse, any

changes seen in the children's blood pressure or pulse were minimal.

" The study shows that preschoolers with severe ADHD symptoms can benefit

from the medication, but doctors should weigh that benefit against the

potential for these very young children to be more sensitive than older

children to the medication's side effects, and monitor use closely, "

concluded Dr. Greenhill.

PATS was conducted by researchers at Columbia/New York State Psychiatric

Institute, Duke University, s Hopkins University, New York University,

the University of California Los Angeles, and the University of California

Irvine, in collaboration with NIMH staff under a cooperative agreement.

The National Institute of Mental Health (NIMH) mission is to reduce the

burden of mental and behavioral disorders through research on mind, brain,

and behavior. More information is available at the NIMH website, <HYPERLINK

" http://www.nimh.nih.gov/ " http://www.nimh.nih.gov>.

The National Institutes of Health (NIH) -- The Nation's Medical Research

Agency -- includes 27 Institutes and Centers and is a component of the U.S.

Department of Health and Human Services. It is the primary federal agency

for conducting and supporting basic, clinical and translational medical

research, and it investigates the causes, treatments, and cures for both

common and rare diseases. For more information about NIH and its programs,

visit <www.nih.gov>.

##

This NIH News Release is available online at:

HYPERLINK

" http://www.nih.gov/news/pr/oct2006/nimh-16.htm " http://www.nih.gov/news/pr/oct20\

06/nimh-16.htm.

To subscribe (or unsubscribe) from this list, go to HYPERLINK

" http://list.nih.gov/cgi-bin/wa?SUBED1=nihpress & A=1 " http://list.nih.gov/cgi-bin/\

wa?SUBED1=nihpress & A=1.

Pat

R. Schissel, President

AHA/ Asperger Syndrome and High Functioning Autism Association

phone

fax

PatS@...

www.ahaNY.org

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