MEDICAID AUTISM WAIVERS AND STATE AGENCIES SERVING PEOPLE WITH AUTISM

April 10, 2007
2007-R-0319




By: Saul Spigel, Chief Analyst


You asked (1) for a list of states with Medicaid waivers that cover services specifically for people with autism and (2) what agencies other states use to oversee service delivery to this population.

SUMMARY

Four states—Colorado, Indiana, Maryland, and Wisconsin—are operating Medicaid waivers covering home- and community-based services specifically for people with autism. All are limited to children. Massachusetts applied for a waiver in late 2006 and is waiting for approval.

Forty-four (44) states and the District of Columbia have received waivers to provide home- and community-based services to people with developmental disabilities (DD). Depending on each state's DD definition, these waivers may cover services to people with autism. This report focuses on the four states with autism-specific waivers. A future report will look at the states with DD waivers.

We found three states—Massachusetts, Pennsylvania, and South Carolina—that have a state government unit dedicated solely to overseeing or providing services to people with autism. Most other states include autism in their definition of DD and give the agency or unit that has programmatic responsibility for this population responsibility for services to those with autism, as well. Connecticut, though, is one of five states whose DD definition appears to exclude autism unless the individual's intellectual functioning means that he or she also has mental retardation (Alabama, Massachusetts, Mississippi, and Virginia are the others, but Massachusetts' recent reorganization of its Mental Retardation Department may indicate this has changed).

A subsequent OLR report will examine how states define DD and to which agency they give principal responsibility for delivering or overseeing services to people, particularly adults, with autism.

MEDICAID WAIVERS

Medicaid Waivers Generally

States have received Medicaid home- and community-based waivers for (1) people with developmental disabilities, generally, which can include people with autism, and (2) specifically for people with autism. Forty-four (44) states and the District of Columbia have received developmental disability waivers while four have received autism-specific waivers: Colorado, Indiana, Maryland, and Wisconsin. Some states operate both types of waivers but permit people to receive services only under one waiver at a time.

The waivers allow individuals who would otherwise need long-term institutional care to receive service in their communities. Each state determines the services it covers under the waiver. According to a recent Government Accountability Office (GAO) report on federal autism activities, states' autism waiver programs generally offer the same services as their developmental disability waivers; the primary difference is that the autism waiver may offer early intervention behavioral therapies targeted to young children (http: //www. gao. gov/new. items/d06700. pdf).

Although people with autism can potentially receive services under these waivers, many do not because they do not meet eligibility rules or because the states limit enrollment. A person is eligible for waiver services only if, without the waiver's availability, he or she would need long-term institutional care. Consequently, people at the higher functioning end of the autism spectrum, such as those with Asperger's syndrome, are typically not eligible for waiver services.

States can cap waiver enrollment, and some that do have long waiting lists. Because some autism interventions have been found to be effective only when started at an early age, children who remain on the waiting list for several years may no longer be eligible for services when an a slot opens. One (unnamed) state told GAO that its waiting list is five years long, and its autism waiver covers only one specific kind of intensive intervention, which must begin before age six. Since children are not usually diagnosed with autism until age three, this combination means that no child with autism has ever received waiver services in that state.

Autism-Specific Medicaid Waivers

Colorado, Indiana, Maryland, and Wisconsin have waivers specifically addressing autism. They all limit waiver services to children. The first three states' waivers are only for children with autism. Wisconsin provides intensive in-home autism treatment under two broader waivers, one for children with DD and the other for children with social and emotional disorders. In Indiana and Wisconsin, children eligible for autism-specific services are also eligible for services under other Medicaid waivers. Table 1 displays information about when the waiver began, the agency that administers the waiver, the ages the waiver covers, eligibility criteria, covered services, enrollment or cost caps, and other information.

Table 1: Autism-Specific Medicaid Waivers


Colorado
Indiana
Maryland
Wisconsin

Date of Waiver
2006
2002
2001
2004 (but state previously covered some autism-related services under Medicaid fee-for-service)

Administering Agency
Health Care Policy & Financing Agency
Bureau of Developmental Disabilities
Department of Education
Bureau of Long-Term Services in Health & Family Services Dept.

Age Range
0-6
0-22
0-21
0-22, must begin receiving services or be on waiting list by age 8

Eligibility
Autism, but not Asperger's or PDD/NOS*
Autism, but not Asperger's or PDD/NOS*
Autism, including Asperger's and PDD/NOS*; must receive early intervention services or at least 12 hours/week of special education services
Autism, including Asperger's and PDD/NOS*

Financial Eligibility
Medicaid-eligible; parents' income included
Medicaid-eligible; parents' income excluded for children under 18
Medicaid-eligible; parents' income excluded
• Medicaid-eligible; parents' income excluded

• Parents with incomes over 330% of federal poverty level pay sliding scale fee

Services Provided
Behavior, occupational, & speech therapy; psychological services
• Autism-specific services: Applied behavior analysis, community transition support, person-centered & individualized support planning

• Also eligible for broader range of services under DD waiver
Intensive, in-home individual support; respite care; family training; residential habilitation; supported employment; therapeutic integration (after-school); targeted case management
• Autism specific: Intensive, in-home autism treatment (20-35 hours/wk) for 3 years

• Also eligible for broader range of services under DD & mental health waivers

Enrollment & Cost Caps
75; $ 25,000 a year
400
None, but enrollment currently closed
None, but enrollment currently closed; Waiting list =250 (typical wait is 12-14 months )

Number Served (year)
75 (2007)
334 (2007)
900 (2005)
250 (2007)


*Pervasive developmental disability/not otherwise specified

Massachusetts applied for an autism-specific waiver in late 2006 and is waiting to hear about approval. If approved, the waiver will cover about 80 children up to age eight who will receive intensive, in-home behavioral supports. Maine has a waiver for adults with mental retardation or autism, but the services it provides—personal support; day habilitation, including behavior management and skills development; supported employment; communication assessment, and crisis intervention— are not specific to people with autism.

STATE OVERSIGHT OF AUTISM SERVICES

We found only three states—Massachusetts, Pennsylvania, and South Carolina—that have a distinct unit that is responsible solely for overseeing or providing services to people with autism. Massachusetts has an Autism Division in its Mental Retardation Department (which is part of the Executive Office of Health and Human Services). Pennsylvania's new (February 2007) Bureau of Autism Services is part of the Department of Public Welfare. And South Carolina's Autism Division is in its Department of Disabilities and Special Needs.

Most other states include autism in their definition of DD and give the agency or unit responsible for services to this population responsibility for people with autism. Connecticut is one of five states whose DD definition appears to exclude autism unless an individual's intellectual functioning means that he or she also has mental retardation (Alabama, Massachusetts, Mississippi, and Virginia are the others). Pennsylvania had been in this category, but its recent reorganization of its Department of Public Welfare to separate mental retardation and autism services suggests this in no longer the case. Massachusetts also recently took this organizational path, which may indicate it, too, has begun to include autism under its DD umbrella.

SS: ro

Call NY Gov: School Districts - Not Parents Should Bear the Burden!

PLEASE ACT IMMEDIATELY TO LET GOVERNOR SPITZER KNOW FIRST-HAND WE
NEED HIS SUPPORT!

PLEASE CALL OR FAX GOVERNOR SPITZER BEFORE 5pm TUESDAY OR WEDNESDAT
AT 518-474-8390 / 518-474-1041 or FAX (anytime)474-1513, and say/write:

"Governor Spitzer. I am a family member (friend) of a special
needs students. Assemblywoman Cathy Nolan and Senator Andrew Lanza
have introduced legislation, Assembly bill 5396 and Senate bill 5972,
that requires school districts, not parents, bear the burden of proof in
special education hearings. Please support this bill now and please
sign off on this bill when it passes Assembly and Senate. We are
asking you to help our most vulnerable families protect their child's right
to an appropriate public education."

ADDITIONAL BACKGROUND FYI:
This legislation would remedy the U.S. Supreme Court decision from a
year ago in Schaffer v. Weast, which turned the clock back decades
for children with disabilities. In the absence of a state law to the
contrary, this court decision forces parents to bear the burden of
proof in special education hearings over their child's Individual
Education Plan (IEP). Parents, therefore, are charged with
presenting their case, making legal arguments, examining and cross examining
witnesses, including hostile witnesses, and adhering to the
procedural requirements of a hearing. For those parents unable to afford legal
representation, this burden is unjust and often impossible. The
Legislature must restore the pre-Schaffer status quo that existed in
New York since 1975 which was the inception of special education.
Until this bill passes and is signed into law, most parents, especially
those of limited means, DO NOT STAND A CHANCE if they must defend their
child's right to a Free and Appropriate Public Education.

SC Legislature overrides Governor's Veto of Autism Bill

07 June 2007
House overrides autism veto; bill now law
The House easily overrode Gov. Mark Sanford's veto of a bill Thursday
extending insurance coverage to children with autism.
The vote was 114-0.
After voting, House members turned toward the balcony and gave families
representing children who have the disorder a standing ovation.
Before the vote, Rep. B.R. Skelton, R-Pickens, chastised the governor
for striking down the measure.
"He has four healthy children and I don't think he has ever met anybody
who didn't have healthy children," Skelton said.
The Senate had previously overrode the veto, also unanimously.
The governor' s office maintains the provision will raise health care
costs.

Texas Gov: Sign Autism Bill!

Gary Scharrer
Austin Bureau
http://www.mysanantonio.com/news/metro/stories/MYSA060307.01B.autism.357329a.html
Source: mysanantonio.com
AUSTIN — Parents of children with autism cheered when Texas lawmakers revived a dead bill they say will give families hope, save some from bankruptcy and reduce long-term costs for taxpayers.

But the Texas Association of Business wants Gov. Rick Perry to veto House Bill 1919 because of an amendment that changes the definition of autism from a mental illness to a neurobiological illness — and requires insurance companies to cover treatment for 3- to 5-year-olds with the disease.

The autism insurance measure passed the Senate but languished in the House until just hours before the legislative session ended on Memorial Day, when lawmakers approved it as an amendment to insurance-related legislation.

"Somebody finally heard us," an emotional Cynthia Singleton of Houston said after legislators approved the amendment. "Parents have been struggling for years to be heard, and, I think, somebody finally cared enough to help make it happen."

Singleton said she and her husband have spent more than $100,000 on treatment for their 8-year-old son with autism. They financed the treatment by selling a four-bedroom home in Houston and renting a three-bedroom apartment for more than two years.

Most families can't afford the expensive, intensive intervention that offers some level of success if the treatment starts early.

By the numbers
1 million: The number of children, up to 18, that the Texas Department of Insurance estimates are privately insured.
1,111: Assuming a 1 in 150 prevalence of autism and that this bill covers three years of a child's life, it is estimated this many children will be covered in any given year. However, some of these children will not require extensive treatment.

$208,500: Dollars the state could save per child across 18 years of general revenue-funded educational services if the child undergoes early intensive behavior intervention, according to results from a University of Houston study.

$771.5 million: Amount the state will save in special education costs alone, within the first 10 years of the bill's passage.

$2 million: Average lifetime savings for a child with autism who receives early intervention, according to national projections.

Source: Office of state Sen. Eddie Lucio



"What we know about brain development is that when children are very young, their brains are very plastic. You can shape and change how the brain functions," said Theresa Diaz, president of the Autism Society of Greater San Antonio. "At its heart, autism is the brain processes information completely differently from a typically developing brain."

Diaz has a 5-year-old son with autism.

Intensive and early intervention helps the brain to rewire itself to the point that "children will still have autism, but they most likely will be able to be much more functional," she said.

But the costs are staggering without insurance coverage.

"We have families all over town who are declaring bankruptcy left, right and center because they are just trying to figure out how to get their children to function," Diaz said.

The Texas Association of Business, which routinely tries to fend off any governmental mandate on business, has asked Perry to veto the measure.


(Photos by Bahram Mark Sobhani/Express-News)

Theresa Diaz struggles to hold her son, Merced, as they make a peanut butter and jelly sandwich with his sister, Paloma.


Merced Diaz, who is autistic, plays on a backyard swing with his sister, Paloma, and mom, Theresa.


"It's not about autism. It's not about brain injuries. It's not about cervical cancer," said the association's Shelton Green. "We want to avoid placing mandates on employers, on their health benefit policies."

Such requirements increase costs for employers already struggling with annual insurance premium increases, he said.

"We want the free market to work," Green said. "We want to leave the discretion up to the employers and let them decide what health plans (to provide) and not the state."

Citing a February report by the Centers for Disease Control and Prevention that one of every 150 children has some level of autism, Diaz and others said taxpayers face a staggering future cost if those children do not receive treatment.

If insurance coverage for autism treatment is "such a good idea and such a cost savings, then employers should do it today without a state mandate," said Green, adding he had "nothing against those with autism or children and families dealing with autism. It's a tragic situation."

Perry spokesman Robert Black said the governor has not decided whether to veto the bill.

The number of Texas children with autism has nearly doubled in four years, reaching 17,282 in the 2005-06 school year, according to the Texas Education Agency. But experts contend the count is vastly understated and does not include large numbers of children with autism who are home-schooled.

Sen. Eddie Lucio, D-Brownsville, has been trying to pass the autism insurance bill for six years.

"Not only will this legislation save the state billions of dollars in the next decade alone, but it will bring renewed hope to many of these children and their parents," Lucio said. "We can honestly say we are giving children an opportunity for a more independent life."

Adults with autism who did not get treatment as children often need extensive care that can cost $100,000 per year per individual, Diaz said.

She and others wanted the coverage to extend to younger and older children but settled for 3-to-5 age range as a compromise.

In Bexar County, the average age of a child when diagnosed with autism is 7, Diaz said.

The warning signs for children with autism show up between 10 and 18 months "and the diagnosis should begin so that the intervention can begin," Diaz said.

If the bill becomes law, insurance coverage would help families pay for applied behavioral analysis, a tested approach for treating autism, and such services as behavior management, speech therapy, physical therapy and occupational therapy, said Singleton, the Houston mother.

She has been fighting for insurance coverage for about seven years and helped inspire other parents to contact lawmakers last month.

"People should not have to choose between getting treatment for their kids or having to sell their house," Singleton said. "There is no cure. Recovery is what they talk about."

Children with early treatment show average IQ, can do grade-level work and function independently in a general education classroom without support, Singleton said.

"We came very, very close to that," she said of her son's progress. "We had to stop doing some of the applied behavior analysis because we just ran out of money."

Our Legislation on the Radio!

This from Nadine Gratz in Sen. Robson's office:

At 6 am tomorrow morning (Thursday, May 31), Sen. Robson will be the special guest on Wisconsin Public Radio talking about the autism bill. She will be on Joy Cardin's show on the statewide "Ideas Network". Judy will be on from 6-6:30 am. In the 6:30-7 time slot, Joy may have someone representing the insurance companies that oppose the bill as an insurance mandate. It would be great if you could get the word out to your members to listen and possible call in with their personal stories and experiences. It would be helpful to have callers supporting Judy and the bill, but it is even more important to have the insurance industry challenged by real people with real needs.

Hope you can get the word out. Of course, we'll spread the word to other groups, organizations and legislators too. Thanks again.


Also:

Rob Ferrett of Wisconsin News Connection called me to do an interview. This is kind of a radio-news wire that will air interviews on 20-40 stations, so it seems as if
we'll get some coverage from them for the rally. He interviewed me for
about 5 mins. and will edit it into 20-30 second sound bites to be
played on radio stations throughout the state. I really focused on the
terrible time families have waiting for treatment and the unfairness
aspect of not treating autism.

If anyone hears this on a radio broadcast, please let me know.

Step It Up 4 Autism Rally Tomorrow!

Prior to the public hearing for SB 178, the bill that would insure that
people with autism had the right to treatment, there will be a rally on
the Capitol Steps (the rain location is the Rotunda of the Capitol).
Please bring signs and wear t-shirts or Autism pins, etc. as there will
be media present.

A strong showing here will allow our representatives to see that we are
committed and organized, making our bills journey through both houses
much easier!

Rhonda

South Carolina Joins Push for Insurance Coverage

Governor should support coverage for autistic children
Bill would provide needed therapy for young people up to $50,000 a
year

Published: Tuesday,

May 29, 2007 - 2:00 am

State lawmakers approved a bill that would require private insurance
to cover treatment for autistic children. Gov. Sanford should sign the
bill.

A spokesman for the governor on Friday said the bill had not yet
reached Sanford for his review. In the past, however, Sanford has been
reluctant to impose mandates on the insurance industry. The hope among advocates
is that he will set aside his personal misgivings and approve this needed
legislation.

In 2005, a similar situation arose: Sanford, despite his reservations,
allowed a bill to become law that required many private health plans
to provide greater coverage for serious mental illness. Sanford refused
to sign the bill but neither did he veto it, and by his passive support it
became law.

The current autism bill is equally worthwhile. Autism, a disease that
can severely impair a young person's ability to communicate, form
relationships and adapt to change, is the only neurological disorder not required
to be covered by private insurance in South Carolina. The bill would require
insurance to pay for treatment for children, age 16 and under, up to a
maximum of $50,000 a year beginning in July 2008.

In South Carolina, about 2,000 children under 18 have autism. Advocates
argue that early intensive therapy can do wonders for some autistic
children. Advocates say that about half of children who get at least
40 hours of therapy a week can enter the first grade on time. Another 40
percent make considerable progress, they say.

But that therapy can cost up to $75,000 a year, putting it out of
reach of many families with autistic children. Advocates say families across
this state are forced to get second mortgages on their homes or face
bankruptcy trying to provide the intervention their children need. Or they face
the heart-wrenching experience of placing their children in group homes or
institutions -- although there's often a 15-year waiting list for such
institutions.

Even though therapy may be costly for insurers, it could save the state
considerable sums in the future. An autistic child who receives
insufficient treatment sometimes can end up being cared for in an institution at
taxpayer expense. That can cost the state $4 million to $7 million for each
patient.

Compassionate consideration for children suffering from autism helped
persuade state lawmakers to follow the lead of at least 17 other
states that require coverage. Early intervention for children also may save the
state millions of dollars in the future. Gov. Sanford should sign the bill
and give autistic children the opportunity to lead more productive and
perhaps even more fulfilling lives.

Nadine Gratz Answers Questions re: SB 178 Coverage

Dear Laura:

I am writing in answer to your questions to Rhonda about SB 178, authored by Sen. Judy Robson, relating to autism services in health insurance plans.

1. My family has health insurance through Unity, which is based out of Sauk City. We have a PPO. It is a group plan through my husband's
workplace. Will we have coverage through this proposed legislation?

Yes. The bill requires that the coverage to applies to both individual and group health insurance policies and plans, including defined network plans and cooperative sickness care associations, to health care plans offered by the state to its employees, including self-insured plans and to self-insured plans of counties, cities towns, villages and school districts.

2. What exactly does the bill by Senator Robson call for?

The bill requires all health insurance policies and plans to cover the cost of treatment for autism, Asperger's syndrome and pervasive developmental disorders not otherwise specified, if the treatment is delivered by specifically identified providers.

3. My daughter receives services through a licensed psychologist. Will these fees be covered?

Yes. The list of covered providers includes psychologists as well as psychiatrists, social workers certified or licensed to practice psychotherapy, paraprofessionals working under the supervision of any of these three types of providers or a professional working under the supervision of an outpatient mental health clinic.

I hope this information is helpful to you. The bill will be the subject of a public hearing before the Senate Committee on Public Health, Senior Issues, Long-term Care and Privacy on Thursday, May 31 at 9:30 am in Room 411 South of the State Capitol.

Thank you for your interest and support for this legislation.

Nadine Gratz
Legislative Analyst, Office Senator Judy Robson
608-266-2253

Epanding the Promise Legislation

Dear Friends of the Autism Community,

While we do not know what causes autism, we do know that with early intervention and concentrated treatment, the symptoms of autism spectrum disorder can be mitigated, enabling individuals with autism and their families to live less isolated lives. The Expanding the Promise for Individuals with Autism Act (EPIAA) will provide additional treatment and support resources, increasing access to effective therapies and essential support services for people with autism.

Bill Summary Description

The EPIAA will authorize approximately $350 million in new federal money – over and above all existing federal spending on autism – for important initiatives related to treatments, interventions, and services for both children and adults with autism. More specifically, the EPIAA authorizes - The creation of a task force (with not less than 1/3 autism community membership) to report to Congress and the Executive Branch on the state of evidence-based biomedical and behavioral treatments and
services for both children and adults with autism, including identifying gaps in applied research on such treatments, interventions and services. Demonstration grants for the coverage of treatments, interventions and services ($20 million annually).

Planning and demonstration grants for services for adults with autism ($20 million annually). Grants for the expansion of access to immediate post-diagnosis care
($10 million in Fiscal Year 2009, growing to $20 million by Fiscal Year 2012).
National training grants for the University Centers of Excellence for Developmental Disabilities for training, technical assistance and additional services for individuals with autism and their families $13.4 million annually). A Government Accountability Office (GAO) study on service provision and financing. Grants to protection and advocacy systems to better meet the needs of families facing autism and other developmental disabilities, including legal representation ($6 million annually).

Current Status

Currently, the EPIAA House bill has been referred to the House Energy and Commerce Committee, chaired by Congressman John Dingell (MI-15). The Senate version of the bill has been referred to the Senate Committee on Health, Education, Labor, and Pensions, chaired by Senator Edward Kennedy (MA).

Cosponsors

House Legislation - HR. 1881 was introduced by Congressman Michael Doyle (PA-14) on April 17, 2007. Currently, the bill has 23 cosponsors.

There are no WA state cosponsor of H.R. 1881? Please consider urging your House Representative to cosponsor the EPIAA, CLICK HERE to send an email!

Senate Legislation – S. 937 was introduced by Senator Hillary Clinton (NY) on March 20, 2007. Currently, the bill has 8 cosponsors.

Please consider sending an email to your senator urging them to cosponsor the EPIAA
legislation!!

5 minutes of your time today will make a difference. If you have more time, please consider asking 2 more parents of children with Autism to do the same.

Thank you for your consideration.

Peacefully,
Arzu

California Action Alert

AN ACTION ALERT FROM A PARENT REGARDING ASSEMBLY BILL (AB) 1490.

The introduced version of this bill would have corrected a problem in
existing state law, which currently endangers many nonpublic
nonsectarian schools that deliver special education
services. "Nonpublic nonsectarian schools" are the nonpublic
placements where disabled students receive much needed interventions,
such as ABA ! Unfortunately, due to amendments, AB 1490 has morphed
into a bill about portable classrooms! None of the beneficial changes
proposed in the introduced version remain.

Why this issue is important to parents of children with autism:

Last year, the Department of Education notified many nonpublic
schools the Department would withdraw their certification to deliver
special education if their staff did not meet the federal "highly
qualified" requirement (No Child Left Behind). The explanation
behind this action was that the state disburses federal funds to
school districts to provide special education services and the school
districts then pay the federal funds to nonpublic schools to deliver
special education services; so therefore, the nonpublic schools
receive federal funds and must comply with the same federal
provisions as the public schools.

This narrow interpretation of law requires nonpublic schools to spend
valuable resources to comply with laws when it is unlikely it was the
intention of the federal law to have it apply to nonpublic schools.
At a time when there is a shortage in special education teachers,
nonpublic schools have to compete with public schools for
credentialed teachers when the nonpublic schools are not able to
provide the same health or retirement benefits as the public
schools. Consequently, nonpublic schools must spend resources to
develop and train staff to meet state credentialing requirements.
Public schools are able to request "emergency permits" from the
Commission on Teacher Credentialing when their staff are not able to
meet credentialing requirements, whereas nonpublic schools may not as
state law only allows public schools to request emergency permits
from the Commission on Teacher Credentialing.

Last year, our world fell apart when we opened a letter from our
son's school district essentially informing us his placement would
change as of the deadline the Department of Education had imposed
upon his nonpublic school to meet the "highly qualified" requirements
in federal law. We freaked out. Our son is on the severe end of the
spectrum and the only way his public school was able to meet his
unique needs was placing him in a nonpublic placement. Fortunately,
his placement did not change because his nonpublic school was able to
work things out with the Department of Education. However, without
changes to law, we continue to fear disruption in his education if
staff levels at the school should dip.

The introduction of AB 1490 appeared to resolve this issue. Among
other things, it
Removed the requirement that special education teachers in nonpublic
nonsectarian schools have the state teaching credentials equivalent
to "highly qualified" as specified in federal law for public school
teachers;
Required the Commission on Teacher Credentialing to develop
alternative credential requirements for special education teachers in
nonpublic schools; and
Prevented the state from withdrawing certification from a nonpublic
nonsectarian school (that meets all state requirements for
certification) if one or more of the school's employees lacks a
teaching credential.

If the gutting of AB 1490 was due to costs associated with the
Commission on Teacher Credentialing having to develop alternative
special education teacher credentials for nonpublic schoolteachers,
then Assembly Member Mendoza needs to amend the bill to address
legislative appropriation for the costs.

In every public school, there are students with disabilities that
have unique needs not met in that setting. It is not right for the
state to allow existing law to force closure, or severely limit
enrollment, of highly specialized private sector schools for not
meeting public sector school requirements.

Please contact Assembly Member Mendoza's office and ask him to amend
AB 1490 to include provisions similar to what were in the introduced
version.

Assembly Member Mendoza's contact information at his Capitol Office
is:

State Capitol District Office:
P.O. Box 942849
Sacramento, CA 94249-0056
Tel: (916) 319-2056
Fax: (916) 319-2156 12501 E. Imperial Highway
Suite 210
Norwalk , CA 90650
Tel: (562) 864-5600
Fax: (562) 863-7466

Also, please contact the Assembly Members that serve on the Committee
on Education and ask them how they could approve the gutting of such
important provisions from a bill effecting the education of our
students.

The Members of the Committee on Education are:
Committee Members District Phone E-mail
Gene Mullin - Chair Dem-19 (916) 319-2019
Assemblymember.mullin@assembly.ca.gov
Martin Garrick - Vice Chair Rep-74 (916) 319-2074
Assemblymember.Garrick@assembly.ca.gov
Julia Brownley Dem-41 (916) 319-2041
Assemblymember.Brownley@assembly.ca.gov
Joe Coto Dem-23 (916) 319-2023 Assemblymember.coto@assembly.ca.gov
Mike Eng Dem-49 (916) 319-2049 Assemblymember.Eng@asm.ca.gov
Loni Hancock Dem-14 (916) 319-2014
Assemblymember.hancock@assembly.ca.gov
Bob Huff Rep-60 (916) 319-2060 Assemblymember.huff@assembly.ca.gov
Betty Karnette Dem-54 (916) 319-2054
Assemblymember.Karnette@assembly.ca.gov
Alan Nakanishi Rep-10 (916) 319-2010
Assemblymember.nakanishi@assembly.ca.gov
Jose Solorio Dem-69 (916) 319-2069
Assemblymember.solorio@assembly.ca.gov

ADVOCATE!

WOARN: "STEP IT UP 4 AUTISM, WISCONSIN!"

CONTACT: Rhonda J. Greenhaw Wood
Organizer
WOARN - Wisconsin Organizing 4 Autism Rights Now
(608)669-7660
http://www.Bloggin4AutismPower.blogspot.com
Wisconsin Organizing 4 Autism Rights Now (WOARN) tells Wisconsin state legislators to: Step It Up 4 Autism!
Madison, Wisconsin -- May 31, 2007 -- Wisconsin Organizing 4 Autism Rights Now (WOARN) is organizing a Public Hearing Rally, Step It UP 4 Autism, on Thursday, May 31, at 8:00 a.m. on the grounds of the Wisconsin State Capitol prior to the Public Health Committee Meeting in the State Senate that day.
As the number of people with autism is dramatically on the rise in Wisconsin and the rest of the United States, WOARN and a broad coalition of interested groups, families and community members are joining together to demand that the state of Wisconsin address this issue that affects so many of our citizens.
"Right now, tax payers in Wisconsin are paying nearly 100% of the costs for providing treatment for these kids. Even though many of them have private health insurance, the companies just refuse to pay, leaving families to struggle to pay for treatments themselves or forcing them into long waits for state assistance," rues Rhonda J. Greenhaw Wood, an organizer with WOARN and mother of a daughter with Autism. "We had to wait a year while our daughter struggled to be able to answer simple yes and no questions. Since our daughter began treatment, she has made tremendous gains in her language skills and can tell me if she needs something. No Wisconsin family should be forced to play this nightmare of a waiting game."
Senate Bill 178, introduced by Senate Majority Leader Judy Robson, will help alleviate the burden on state tax payers who currently pay for all of the care needed by children with autism. This bill would guarantee insurance coverage for treatment for children with autism whose families have private health insurance coverage.
Many people affected by autism, their families, friends and professionals will be in attendance to let the Senate Public Health Committee know that this bill is critical to lives of people affected by autism. Currently many families linger on a state waiting list to receive coverage for treatments that help children deal with their autism, this legislation will help insurance companies do their part to provide treatment, helping ease the burden on state tax payers.
Currently 1 out of every 144 children in born in the United State will be diagnosed with Autism Spectrum Disorder (ASD), a condition that impacts communication, social ability and behavior. With early intervention, children are able to learn communication tools that help them as they function in society, leading to independent and productive lives.
WOARN is encouraging everyone affected by ASD in the state of Wisconsin to meet at the Capitol on May 31st to let legislators know how important this bill is for families. People are encouraged to make signs to make signs and bring their entire family to this event.
For further information, please contact WOARN at (608) 669-7660 or on the web at:
http://www.BloggingforAutismPower.blogspot.com
# # #

Parents of Disabled Child Win Ruling

By Robert Barnes
Washington Post Staff Writer
Tuesday, May 22, 2007; Page A03

The Supreme Court ruled yesterday that parents of disabled children do not have to hire lawyers to sue school districts when they attempt to ensure that their children's special needs are adequately met.

The court found that the federal Individuals With Disabilities Education Act (IDEA), which guarantees children a "free appropriate public education," gives rights to parents as well. Parents may represent themselves in federal court when disputes arise between them and a school district over what is best for the child, the court held.

Texas Legislators Hold Up Vote on Insurance Coverage for Autism Bill

NEWS RELEASE Media Inquiries:
FOR IMMEDIATE RELEASE Cynthia Singleton
713-201-7250

Texas Autism Advocacy, Senator Eddie Lucio, and
Representative John Davis Call on Legislators to Allow
Floor Vote on SB 419

Bill would allow insurance coverage of treatments
for children with autism

Houston – May 21, 2007 – The members of Texas Autism Advocacy call upon
the Texas House of Representatives to send schedule Senate Bill 419 for
immediate debate so that is can be heard and voted on in by the full House. SB
419 would allow insurance coverage of treatments for children with Autism
Spectrum Disorder.

In April, SB 419 unanimously passed the Texas Senate. The House Insurance
Committee also unanimously voted for the legislation. The bill awaits
consideration before the House General State Calendar.

“Texas Autism Advocacy would like to compliment Senator Eddie Lucio for his
leadership in improving insurance coverage of treatments for children with autism
by authoring Senate Bill 419,” said Michelle Guppy, founder of Texas Autism
Advocacy. “On behalf of the 4,000+ members and supporters, we congratulate
him for his outstanding leadership in shepherding SB 419 through the Senate,
where was passed out of the Health and Human Services committee
unanimously and passed on the Senate floor unanimously.”

Ms. Guppy continued, “We recognize Senator as a true leader who puts shortterm
political interests aside in favor of long term best fiscal interests of the
taxpayers of the State of Texas. We also recognize the leadership and support of
Representative John Davis, sponsor of the House companion bill HB 1224.”
Representative Davis stated "I want to thank Senator Lucio for asking me to be
the House sponsor of Senate Bill 419 and also would like to thank
Representative Juan Garcia, my joint author, for his steadfast support. Children
with autism spectrum disorder are very, very special. They and their parents
need and deserve our attention and support to live life to its fullest."
Sen. Lucio stated, "I respectfully call on House Calendars Committee
Chairwoman Beverly Woolley to please consider the suffering of the families of
children afflicted with Autism Spectrum Disorders (ASD) and schedule Senate
Bill 419 for consideration on the House floor.
“I feel confident that my colleagues in the House will want to give young children
an opportunity to lead normal lives through my bill that requires insurers to cover
early intervention for autistic children ages three to five. Proper therapy and
treatment at this early age will reduce the need for services in school and
throughout the person’s lifetime. SB 419 offers Texas children with ASD hope
that they can lead normal lives.

“I am asking for Rep. Woolley to please let this bill come before the House as
soon as possible, since the end of the 80th Legislative Session is just days
away.“


About Texas Autism Advocacy
Texas Autism Advocacy is an on-line information & resource center for persons
on Autism Spectrum Disorders. It has the mission to provide networking and
support for individuals, families, and professionals. It is through networking that
like-minded people can unite to advocate policy changes that families of children
with autism in Texas so desperately need. www.texasautismadvocacy.org

Michelle M. Guppy
Don't tell God how big your storm is - tell the storm how big your God is! Texas Autism Advocacy: www.TexasAutismAdvocacy.org

"There are some aspects of a person's life that we have no right to compromise. We cannot negotiate the size of an institution. No one should live in one. We cannot debate who should get an inclusive education. Everyone should. We cannot determine who does and who does not get the right to make their own choices and forge their own futures. All must."

Houston County Ga. Bd. of Ed. Gone Crazy: Arrests Mom of Boy Abused at School for Not Sending Kid Back!

In what can only be described as government officials drunk on their own power, a mother has been arrested and had to post a $1,000.00 bond in order to obtain her freedom for violating the state's truancy law. Her son, a seven year old boy with autism, was tormented by his school bus driver and other kids on the school bus and was returned home with unexplained bruises. The mother requested time to reintroduce her child back to school, and had also applied to homeschool the boy, but had received no response from the school on the application even though the boy's physician said he was suffering post-traumatic stess disorder as a result of the abuse suffered at school and would be better off at home.

The mother has also filed a complaint with the U.S. Department of Education who is looking into the matter.

Please feel free to call and voice your outrage with the Houston County Georgia Board of Education at 1-478-988-6200

Danielle's Law - Help Save Lives!

Please contact your Congresspersons (there is a link on the left for your U.S. Senate and House member look-up) and ask them to cosponsor these bills. They are the Federal version of a NJ law called Danielle's Law.

It could save the life of one of our kids if they ever end up in a group or other facility.

"Danielle's Law requires that staff serving individuals with disabilities call "911" in the event of a life threatening health emergency. Family Alliance members Diane Gruskowski (Danielle's mother) and Robin Turner (Danielle's aunt) worked tirelessly to secure passage of this important bill, which was signed into law by Governor McGreevey on October 26, 2003. Danielle's Law was named after Danielle Gruskowski, a 32-year old woman with Rett Syndrome, who died on November 5, 2002 when staff at her Edison, NJ group home failed to call "911" in response to a high fever she had developed the previous evening."
http://www.thefamilyalliance.net/

S.1420 Title: A bill to amend title XIX of the Social Security Act to require staff working with developmentally disabled individuals to call emergency services in the event of a life-threatening situation. Sponsor: Rep Holt, Rush D. [NJ-12] (introduced 5/17/2007)

Referred to House committee. Status: Referred to the House Committee on Energy and Commerce.

OFFICIAL TITLE AS INTRODUCED: To amend title XIX of the Social Security Act to require staff working with developmentally disabled individuals to call emergency services in the event of a life-threatening situation.

Call for Action: Severe Discrimination of Autistic Student

Call for Immediate Action:

Below is a letter from a mother regarding an egregious example of mistreatment of her daughter, a member of our special needs community. Brigid, a girl with autism and a serious physical injury, will not be graduating with her class, and will lose out on a scholarship that she has earned to Cornell College because her school district has refused to accommodate her special needs!

We cannot let this stand. As individuals, family members and friends of specials needs, and people who believe in justice, we must immediately voice our support for Brigid and demand that she be given credit for her work and be allowed to graduate with her class! Our children with special needs within the public and private school system depend upon our taking a stand in situations like this, so that other children do not suffer what Brigid has been forced to endure.

Please join with me to demand justice for Brigid, who has worked so hard to appease a school system that has refused to provide her with appropriate accommodations, discriminated against her and publicly humiliated her! Below are the email addresses of officials of the Catholic Diocese of Portland, the Principal of Catherine McAuley High school where Brigid attended and Department of Education officials from the state of Maine.

Please inundate their email inboxes and telephone with a voice of support for Brigid. We must show her and the rest of the world that the special needs community supports its own and stands together against discrimination and abuse of this sort!

Here are the email addresses and phone numbers to contact:

Bill Wood, Parish Services Coordinator
Disability Services
bwood@ccmaine.org
1-877-621-8520

Bishop Richard Malone, Th.D.
Roman Catholic Diocese of Portland
1-207-773-6471
1-207-773-0182 – fax
http://www.portlanddiocese.net/contact_submit.php


Principal of Catherine McAuley Highschool
Mary Kelleher
sredwardmary@mcauleyhs.org
1-207-797-3802
1-207-797-3804 – fax

David Noble Stockford
Policy Director and Team Leader, Special Services
Maine Department of Education
david.stockford@maine.gov
1-207-624-6650
1-207-624-6651 – fax

Pam Rosen
Maine Advisory Council on Education of Children with Disabilities
Maine Department of Education
Pam.rosen@main.gov
1-207-624-6650
1-207-624-6651 - fax



Sincerely,
Rhonda J. Greenhaw Wood
WOARN - Wisconsin Organizing for Autism Rights Now


Here is the letter her mother wrote the Catholic Diocese of Portland:

Dear Mr. W,

I am contacting you because of your role in Disability Services for the Roman Catholic Diocese of Portland. My daughter has attended Catherine McAuley High school for 4 years. She is a wonderful young woman, who works very hard, and has suffered greatly from the misunderstandings, intolerance, and most importantly, from the code of silence surrounding disabilities at McAuley High School.

Brigid is a student with an Autism Spectrum Disorder. In addition, she sustained a closed head injury in March, 2005. This injury resulted in her spending the remainder of her sophomore year at the outpatient clinic of New England Rehabilitation Hospital. Brigid strove hard to regain lost skills and to relearn new skills. She completed the coursework for her sophomore year 2 days before her junior year started.

Since that time, Brigid has been absent from school for extended periods of time, due to a seizure disorder resulting from the closed head injury. She has also missed school due to unrelated surgeries. The Principal has always been informed of absences and concerns by Brigid's physicians and myself. Brigid was, on several occasions, under physician's orders to refrain from attending school.

Throughout this time, the Administration of the High School has consistently prevented staff from pertinent knowledge regarding Brigid's absences. The school nurse was not given copies of physician's notes, letters or recommendations. The Guidance staff was unaware of many challenges this child faces until the middle of this academic year.

As a result, Brigid has been repeatedly academically penalized for physician ordered absences. This is discrimination. She has been humiliated in public. She has been afforded few accommodations, and little, or no, understanding or compassion. Silence and withholding of information by the Administration have been tools of abuse.

The stress of this constant abuse to a young disabled girl led her to a suicide attempt this academic year. With full knowledge of this, the Administration made no changes in the code of silence. Teachers were left to believe that Brigid was truant, lazy, unwilling to work, when, in fact, the opposite was true. Brigid received a failing grade for an assignment involving small motor control, strength, and coordination. She was unable to do this assignment to the teacher's expectations because of a documented disability. Brigid received class participation grades of 0% for physician ordered absences. Work delayed due to seizures were graded as late assignments.

On her return to school following a month of seizures, Brigid completed 3 weeks of work within one week, while keeping up with her current assignments. She did this in order to participate in an extra curricular activity. My daughter made a Herculean effort to complete work, as if she were not disabled, and succeeded. Her reward was cruel. She was pulled off of the bus in front of her peers and informed that she may not attend the extracurricular activity she worked so hard for.

This is just one example.

This Spring, Brigid's counselor and Sweetser Case management and her Neurologist determined that attending Catherine McAuley High School was adverse to Brigid's health. Brigid continued to work at home on her assignments, I continued to deliver these to staff as I was able. Some staff were not notified that Brigid would not be in school or that assignments were to be delivered to the office for me to pick up. Consequently, the assignments were withheld.

It took several weeks for Brigid to regain the strength and courage to enter school again. Two weeks ago, the Principal informed Brigid's counselor that this effort would ensure that Brigid could graduate with her class. With help, Brigid managed to attend school every day. She made a concentrated effort to complete all work to the best of her ability, communicate with staff, and do well on her tests.

Today was the last day of classes. Brigid had work completed. Quizzes, tests, final exams complete. Brigid turned in her essay for English class. Brigid had been one of the few students who had read the assigned text. She received one of the highest grades in the quiz about the book. She had a 30 minute conversation with the teacher about the book in early April. Following this conversation, the teacher reported at a meeting with Administration, myself, and Sweetser that Brigid knew the material well. She later requested that Brigid write an additional essay about the book.

Today, when Brigid gave this essay to the teacher, the teacher informed Brigid that she had decided not to accept the work. Brigid will receive a zero, and fail.

A similar occurrence took place last term. Although the Principal told myself, staff, and Brigid, that work outstanding (due to medical concerns) would be accepted until a stated date, one teacher capriciously decided to ignore the Principal's decision. Brigid received a failing grade for doing all of her work very well and giving it to the teacher on time.

The Principal's responses have been that teachers make their own decisions for their own classes and that this matter is not in her control.

Again, Brigid has learned that some people are not true to their word and that this is considered acceptable by an educational leader and a spiritual leader.

This most recent decision on the part of one staff member, if left uncheked, will compromise Brigid's future. Brigid will be unable to attend Cornell College, or take advantage of their generous offer of a four year academic scholarship as well as financial aide.

The code of silence at McAuley which surrounds disabilities, combined with the lack of acceptance, accommodation, charity, or decency has damaged my daughter's educational experience, spiritual experience, sense of trust, and quality of life.

I would have notified you of these egregious events during the past 3 years, but I did not know of the existence of your office and ministry. During the past year, I have notified the Bishop, as well as leaders of Catholic Education in Maine. I have attempted to work constructively with the Disability Rights Center, Sweetser Case Management, Family Crisis Services, physicians, social workers, counselors and the Administration of McAuley High School. My daughter has suffered. She has learned some very hard lessons of loss from the individuals entrusted with her spiritual, moral and academic education.

I do not know if you can help my daughter in any way. I appreciate the time you have taken to read this.

Respectfully,

Gayle Fitzpatrick

Legislative Breakfast - Vision for EQuality, Inc.

Invites you to a Continental Breakfast on Friday, June 1, 2007 with Elected Officials and Dignitaries Who Represent the Citizens of Philadelphia.

Dennis M. O’Brien, Speaker of the House, Arthur C. Evans, Jr., Ph.D., Director of the Department of Behavioral Health and Mental Retardation Services and our Elected Officials Will Discuss the Pennsylvania State Budget as it Relates to Support for:

The Emergency Waiting List for Mental Retardation Services
The Autism Budget
The COLA for Direct Support Professionals

It is of the Utmost Importance that YOU AttendThe State Budget, as proposed, is in jeopardy of not being passed by the Legislature

If You Would Like to Speak and Tell Your Story About Waiting for Services, Please Let Us Know When You Register for the Breakfast

When: Friday, June 1, 20079:00 a.m. to 10:30 a.m.
Where: The Down Town Club The Ledger Building
50 S. Independence Hall West, 11th floor At 6th & Chestnut Streets
Philadelphia, PA 19106

Contact: Kathy Foy
Phone: 215-923-3349 x112
E-mail: rsvp@visionforequality.org

Please Respond by May 25, 2007

To locate and invite your legislators and representatives to attend, visit http://www.legis.state.pa.us/

or Call the Committee of 70 for their contact information at 215-557-3600

The Parking Garage is located at 7th & Ranstead Streets (between Market & Chestnut Streets). When you exit the elevators to the street, you will be on Chestnut Street between 6th & 7th. Turn to the left and walk toward 6th & Chestnut Streets.

The Down Town Club is located on the southwest corner of 6th & Chestnut Streets in the Public Ledger Building. Use the 6th Street entrance to the building. The Club is on the 11th Floor.I-95

NORTH FROM DELAWARE
1. Take I-95 to exit 22 (Independence Mall, Callowhill St, Center City)
2. Exit ramp is on the left; while exiting, stay in the right lane
3. Follow sign to Independence Mall
4. Ramp exits onto Third & Callowhill Sts; there will be a light
5. Stay on Callowhill St.; go three more lights; at 6th Street, go left
6. Get in lane for Independence Mall
7. Go three lights to Market Street
8. Cross Market and turn right at the first street (Ranstead St.)
9. Parking Garage is at the end of the block on the left (One Independence Mall)

FROM NEW JERSEY via THE BEN FRANKLIN BRIDGE
1. Exit the bridge bearing right and go over the overpass
2. Follow signs for 6th Street and the Historical District
3. Continue on exit (it loops around); at the end of the ramp,you will be on 6th Street; always bearing right:
4. Follow steps 6 through 9 as listed above

FROM THE SCHUYKILL EXPRESSWAY
1. Exit 76 at the Center City/676 East exit which is located on the left side of the highway
2. 676 (Also call The Vine Street Expressway) cuts straight through the city towards the Delaware River
3. Exit at Independence Mall/6th Street (the sign reads: The Ben Franklin Bridge) turn right onto 6th Street
4. Follow steps 6 through 9 as listed aboveI-95

SOUTH FROM POINTS NORTH
1. I-95 South to Exit 22/Callowhill Street
2. Stay right and go down ramp to light
3. Turn right at light onto Callowhill Street
4. Stay left and turn left onto 6th Street
5. Follow steps 6 through 9 as listed above

Keep Calling!

To mark the introduction of the insurance mandate legislation into the senate today, let's all make a few phone calls to our assembly people, and at least 3 other assembly members! We can make calls that go something like this:

Today, Senate Majority Leader Judy Robson is introducing legislation in the Senate that would require insurance companies to pay for autism treatment.

This piece of legislation is having a lot of support from both the senate, where 17 members have co-sponsored, and also from the assembly, where 32 members have co-sponsored.

I am calling today to express how important this piece of legislation is to __________(my family, my child, society, etc. - whatever fits for you). Can we count on your support when the bill gets to the assembly?

Once you make the calls, it would be helpful if you could please post your results to the group!

Thanks,

Insurance Mandate Introduced Tomorrow! Stong Co-Sponsorship!

Our efforts are paying off!

The synopsis is, co-sponsors:

32 - Assembly
17 - Senate

This is very, very strong showing" -Nadine Gratz, Senate Majority Leader Judy Robson's Health Policy Analyst.

It will likely be assigned to the Senate Public Health Committee by the President of the Senate, Fred Risser. This committee is chaired by Senator Tim Carpenter.

How soon the chair of the committee holds a public hearing is dependent upon the committee's public schedule. If the bill passes the committee, it will go onto the Senate floor for a vote, which is also schedule dependent and may or may not take place prior to the summer recess.

Once the bill is voted on and passes the Senate, the process begins all over in the Assembly.

When the bill is in committee, it is most likely to get a public hearing. At that time, members of the public may register their support or opposition, and may also register to speak at that hearing.

Although the bill has a strong co-sponsorship, staying in contact with your elected representatives will let them know that this is a priority for you, their constituents.

Texas School Districts Want to Charge Parents to Get Kid's Records

Dear friends:

Our freedoms never disappear in a single fell swoop; it's bit by bit by bit. A harmless tea tax here, SB 889 there.

Remember SB 889? The bill which if it passes in the House will enable our school districts to start levying the-moon-and- the-stars public records charges of their own determination after 100 pages per month? So all of their records will suddenly be in another building*?

The hearing for SB 889 is scheduled for 8 a.m. Monday morning, May 7, before the House State Affairs Committee. Because of the early hour -- even though it may not be heard until midnight -- there will be no time for us to safely wait and visit these folks on the State Affairs committee that day. When they start the hearing for SB 889, we must be there, so we have to arrive on time and sit and wait, wait, wait.

I spent time yesterday afternoon visiting with State Affairs representatives and their staffs and was told again and again that they've already heard from us, in person.

You can send letters and faxes; those are important. You can make phone calls; those are important also. You can contact your own representative, that will count ultimately if it reaches the House floor.

But what will count most will be your physical presence Monday at the hearing. Over and over I heard yesterday in the State Affairs committee offices about the fact that folks had visited their offices. They didn't tell me about the phone calls and letters and faxes. It was the physically showing up.

They're paid government employees/lobbyists ** and we're volunteers
It's not fair that paid government employees and paid lobbyists, for whom this is a normal workday, will be there in droves with all of their time and expenses paid -- ultimately by us.

By contrast, all of us who come must put aside our jobs -- the jobs that pay the property taxes that pay the government employees' and lobbyists' salaries -- do so at our own expense in wear and tear on our cars, parking, etc. -- in order to come and be counted also. If the government employees give the committee members a handout, they have paid staffers to take care of it. Where we pay for the copies for the committee out of our own pockets, the government employees' copies are paid for at a machine funded one way or another by our tax dollars. The government employees have had PR training -- ultimately paid for by us -- whereas we're moms and dads and grandparents and taxpayers.

It really is not fair.

It's not going to be easy and we're being granted no special favors.
When SB 889 was heard in committee in the Senate, although the called time was 8 a.m., SB 889 was not heard -- I have been told -- until 8:30 pm that night. On the record, only one person was physically present to oppose: God bless him, David Lowery of the Austin American-Statesman.

This is why I'm spending Monday, on my own dime and time, to talk to folks at the Lege***. Please call me/email if you can find it in your heart and schedule to come, too. If there is anything I can do to help you come, please let me know.

Sending blessings and gratitude to all of you for all you do in this important work.

Peyton Wolcott
P.O. Box 9068
Horseshoe Bay, TX 78657
www.peytonwolcott. com

Autism and The Conflict Between Treatment and Respect: A Parent's Manifesto

I've been immersed in the world of autism as much as anyone can be who isn't autistic (although there are many "non-typical" similarities I and my husband both believe we share with my daughter).

When my daughter was first displaying autistic traits when she was a year and a half, until we received her diagnosis, my husband and I had many conversations of our belief that she was actually more evolved than we. The way she could implicitly pick up knowledge. The quickness of her mind in so many ways. She could count to 50 and knew all the alphabet and their sounds before a year old! She picked up so much knowledge it was astounding.

When our daughter started to lose her language, at around 1 ½ - 2, and would get frustrated by not being able to "find" a word that we knew she knew, it scared us because we were afraid that some disintegrative issue was happening. It wasn't the "right path" of development. Children didn't develop this way. People began noticing and commenting on Alana's differences. She needed assessments and special help, we were urged to get testing. This, coupled with our own fears that grew the more we read and the more we compared her to "typical" kids of our friends, compelled us to our school where she was tested and diagnosed "autistic." It compelled us to neurologists where she was tested and diagnosed "autistic." We signed up on state lists to get help and assistance. Her IQ was a 35! Quite a scary situation for parents.

I began reading and joining internet groups and feeling the desperate need to find a cure. Searching for answers. Examining her. Getting her therapy.

My husband and I had, from the beginning, determined that we would not "medicalize" her childhood. We wanted to maintain her "uniqueness" that we adored. But I was getting sucked in and panicky, and Alana was getting more angry and aggressive because she could not access her language. She never looked at us in the eyes, and that frightened me.

All the sources I had access to really indicated that this was the crucial time to act. Alana would be lost without early intervention. She needed to be "cured."

Alana was also "bumping into" society. I had to "explain" her differences to a public that expected certain behavior from children. People yelled at us for things like Alana playing with their keys while we were standing in line behind them. Alana would just walk on kids at play groups if they were in her pathway, and I was frightened for my beautiful daughter; someday she would be hurt by one of these people who were angry with her differentness.

Getting more and more into the internet’s autism organizations and searching for clues and cures, I nearly forgot my pledge to appreciate her uniqueness and not medicalize her life. To our credit, we did balk at any treatment that seemed too invasive. We tried the GFCF diet, and yet told her teachers that if it was a kid’s birthday, they should let her eat cake!

I tried a lot of herbals and vitamins and supplements, but anything that she didn't like, I never made her take. Today she is only taking multi-vitamins, acidophilus, fish oil and melatonin (because she has had many sleepless nights). I only give her things that I think are beneficial for all of us.

Further, now that Alana has worked her way through Wisconsin's wait list, and is participating in ABA, and after just having read Michelle Dawson's stance on ABA, and writing a blog on autism power and advocating for autism power, and advocating for parents to have the resources for ABA, I have to address this issue: is ABA unethical? Am I trying to "change" Alana?

The answer is much more complex than a simple yes and no.

After going through panic and trepidation regarding Alana having autism, I finally found some websites of adults with autism. They reaffirmed my and my husband’s first inclination (he never worried the way I did, however, because he never really got into the online autism world), that Alana doesn't need to be "cured." That over medicalizing a child's life is horrifying and degrading. That people with autism should be appreciated for their uniqueness and that the whole person must be accepted.

Now, with that being said, I have to defend the stance of the parents as well. I know the fear of raising a child who is extremely intelligent, but who will put things into their mouth that could hurt them, or who would walk into on coming traffic because they are so engrossed in whatever is engaging them. I know the anguish of worrying about your child being attacked for being different. But most importantly, I knew I had to do something about Alana's frustration at not being able to access "our" language. It wasn't that she didn't want to communicate. On the contrary, I could see her getting very frustrated when she wanted something and couldn't tell me what it was!

ABA, for all its horrible history, enabled Alana to communicate her needs. Will it reshape who she is? Not at all! I would never tolerate that. Alana loves her ABA therapists (from WEAP). She enjoys her therapy sessions. They make it fun for her.

I think the real danger here, the point that Michelle Dawson and others are trying to make about autism, which I believe is a valid commentary about our society in general, is the danger inherent in the rush to push our children into conforming to a narrow definition of what is acceptable. When parents and practioners deviate from the understandable concerns regarding safety issues and the child’s inability to communicate, and enters the realm of “curing” the child from his or her uniqueness, that, I believe is where they cross the line.

When Oprah did her show recently on autism, I was very excited for the national attention autism might receive. After the show I was disappointed. How sad, I thought, that Oprah didn't have anyone with autism on to speak for themselves!

Like all social movements, the striving for rights for autism or power for autism will only succeed when the people we are fighting for participate in the movement. Fully.

Any organization that is working for goals related to autism should seek out people with autism to help define those goals. Further, all parents who are looking into treatment for their children with autism should seek out adults with autism to get their perspective on their plans.

I know from a personal stand point, when I finally accessed the websites of the autists themselves it was revelatory, it was confirming and it was important. I want to validate my daughter’s unique place in this world and use therapy to provide her with the tools to communicate, not crush her individuality. That is something towards which good parents, parents of all children should strive.

Whether autism is the result of genetics, evolution, environment toxicity, vaccinations or a combination of the above, whatever causes “it” doesn’t negate the right of those with “it” to exist, authentically. The right to self determination still applies, and our children’s uniqueness must always be appreciated and never quashed in order to “fit in.” Our treatments, whether they be ABA or biomedical, must always have the consideration that our children are individuals, with certain unalienable rights.

Our Representatives are Supposed to Represent Us!

The important thing we have to remember is that our representatives are supposed to represent us, the citizens of Wisconsin, not the insurance companies. We elect them. Our system was designed that way so that power is distributed to the people, not moneyed interests. But we have to hold our representatives to this trust because money can buy influence. Believe me, though, these people in Madison want to get re-elected, and they don't want to tangle with special needs parents. We are tenacious and will fight like angry mother bears to get what we need for our kids. Many of these politicians, Assembly members especially, have been elected by very small margins of people (someone was telling me today that their representative was elected by around 100 votes). That tells us it would be a very small matter to swing an election if we are organized and demand attention to our needs. And that is what special need parents are best at, all these IEP meetings, filling out forms, fighting bureaucracy to get our kids help are a fine training ground for political organizing. And we are not alone. If people are concerned about insurance companies leaving Wisconsin, don't be. There are parent activists organizing all over the country to get help for their kids. There are laws in 17 states demanding this coverage. Minnesota and Indiana just recently added coverage in their states. And Texas just passed this through their assembly!

The insurance companies won't have any place to hide. They put profits before people for long enough, and we are going to get the legislation passed and get coverage for our kids. We'll make the calls, make the visits, and in the end, we will win, because we are right!

Assembly Members that Need Contacting

Here is a list of the Wisconsin State Assembly Members that need contacting so that we may find out their stance on the issue. Can you make five phone calls tomorrow? Just take five names from the list and call their offices in Madison. Then report back to me, and I'll fill in the spreadsheet I've created with the vote count!

Sheryl Albers (R)
Joan Ballweg (R)
Garey Bies (R)
Pedro Colon (D)
Brett Davis (R)
Jeff Fitzgerald (R)
Donald Friske (R)
Mark Gottlieb (R)
Scott Gunderson (R)
Mark Gundrum (R)
Eugene Hahn (R)
Steve Hilgenberg (D)
Jake Hines (R)
Gordon Hintz (D)
Mark Honadel (R)
Ann Hraychuck (D)
Michael Huebsch (R)
Suzanne Jeskewitz (R)
Dean Kaufert (R)
Samantha Kerkman (R)
Frederick Kessler (D)
Steve Kestell (R)
Joel Kleefisch (R)
Bill Kramer (R)
Frank Lasee (R)
Daniel LeMahieu (R)
Thomas Lothian (R)
Dan Meyer (R)
Louis Molepske, Jr. (D)
Phil Montgomery (R)
Terry Moulton (R)
Jeffrey Mursau (R)
John Murtha (R)
Terry Musser (R)
Stephen Nass (R)
Lee Nerison (R)
Scott Newcomer (R)
John Nygren (R)
Jim Ott (R)
Carol Owens (R)
Kevin Petersen (R)
Jerry Petrowski (R)
Don Pridemore (R)
Kitty Rhoades (R)
Roger Roth (R)
Marlin Schneider (D)
Gary Sherman (D)
Jeff Smith (D)
Tony Staskunas (D)
John Steinbrink (D)
Jeffrey Stone (R)
Pat Strachota (R)
Scott Suder (R)
Gary Tauchen (R)
Barbara Toles (D)
John Townsend (R)
Karl Van Roy (R)
Robin Vos (R)
Amy Sue Vruwink (D)
Leah Vukmir (R)
Sheldon Wasserman (D)
Steve Wieckert (R)
Mary Williams (R)
Annette Williams (D)
Jeffrey Wood (R)
Josh Zepnick (D)
Bob Ziegelbauer (D)
Rich Zipperer (R)

Health Care for All - What a Concept!

Dear Rhonda,

As I travel around Wisconsin, and the country, the number one domestic issue raised is the mounting cost of health care coverage. I support health care for all Americans and last week I was proud to announce bipartisan legislation toward that end.

Senator Graham and I have introduced the State-Based Health Care Reform Act - bipartisan legislation that would create five-year pilot programs in states across the nation, allowing them to work toward maximum coverage by whatever means they deem appropriate. By examining different programs in different states, clearer solutions will emerge for solving the health care crisis nationally.

Competing programs of various designs will provide customized solutions for different states. Although participating states will have great leeway in constructing their programs, they must provide matching funds and reach certain benchmarks including meeting coverage standards, improving efficiency, and lowering administrative costs. To monitor the pilot programs, our legislation establishes the Health Care Coverage Task Force, which will approve grants and review the progress of each program.

Click here to learn more about this important legislation.

Senator Graham and I worked together with the Heritage Foundation and the Brookings Institution to develop this promising new bipartisan approach. If adopted, the State-Based Health Care Reform Act will provide coverage for thousands of Americans who lack adequate, if any, health insurance. This is not a "left" or "right" problem. It's an American problem, and it's going to take a strong national effort to fix it.

Write your elected officials and ask them to support this important legislation.

Health care coverage is the major issue facing the United States domestically, and one that demands a multi-faceted solution. This is an important first step towards ensuring that all Americans have adequate health care coverage, and I am proud to be a part of it.

I look forward to working with you, now and in the future, as we confront this challenge. Thank you for all that you do.

Sincerely,



Russ Feingold
United States Senator
Honorary Chair, Progressive Patriots Fund

Weldon, Maloney Introduce Vaccine Safety Bill

Measure Removes CDC’s Conflict of Interest; Helps Preserve Public Confidence in Vaccine Safety Research

Weldon Introduces Vaccine Safety Legislation

Washington, Apr 19 - At a press conference Thursday, U.S. Reps. Dave Weldon, M.D. (R-FL) and Carolyn Maloney (D-NY) introduced a bill that would give responsibility for the nation’s vaccine safety to an independent agency within the Department of Health and Human Services, removing most vaccine safety research from the Centers for Disease Control (CDC). Currently, the CDC has responsibility for both vaccine safety and promotion, which is an inherent conflict of interest increasingly garnering public criticism.

“There’s an enormous inherent conflict of interest within the CDC, and if we fail to move vaccine safety to a separate independent office, safety issues will remain a low priority and public confidence in vaccines will continue to erode,” said Weldon, noting that across the federal government similar conflicts of interests have been remedied, but with regard to mandatory childhood vaccines the conflict continues to persist unchecked. “This bill will provide the independence necessary to ensure that vaccine safety research is robust, unbiased, free from conflict of interest criticism, and broadly accepted by the public at large.”

To underscore the bill’s importance, Weldon highlighted the fact that a top CDC official urged the journal Pediatrics to publish a Danish study on the link between thimerosal and autism despite the CDC’s knowledge that this very same study was previously rejected by the highly acclaimed journals, JAMA and Lancet. The official urged the editor of Pediatrics to give the study, which he characterized as a “powerful epidemiology” study, an “expedited review.”

“The public has begun to question whether our government is doing all it can to ensure vaccine safety—and they are absolutely right to do so,” said Congresswoman Maloney. "When we in government require children to be vaccinated, we must make every possible effort to ensure that
vaccines are safe. I believe that this legislation will benefit nearly every child in America. I look forward to working with Dr. Weldon and our colleagues in the House to pass this incredibly important bill.”

Specifically, the Vaccine Safety and Public Confidence Assurance Act of 2007 would create and equip an independent office to address, investigate, and head off potential vaccine safety problems—like the use of mercury in vaccines—in an objective and non-conflicted office whose sole purpose is vaccine safety and evaluation. Additionally, it provides $80 million in funding to conduct vaccine safety research and analysis.

Weldon and Maloney were joined by several groups advocating vaccine safety reform, including the National Autism Association, A-Champs, and SafeMINDS.

Capitol Steps for Autism! Thanks to A.N.G.E.L. Inc. for the Photos

Capitol Steps for Autism - Rallying the Troops!

Coalition of Autism Organizations Express Concern About Legislation to Restrict/Eliminate Access to Medicines

WASHINGTON, May 1 /PRNewswire-USNewswire/ -- A coalition of autism organizations today expressed concerns regarding draft legislation that would restrict or eliminate access to compounded medicines doctors prescribe to treat children with autism. The organizations -- A-CHAMP, Autism One, the Autism Research Institute, Defeat Autism Now!, Generation Rescue, Moms Against Mercury, the National Autism Association, NoMercury, REAACH, SafeMinds, SOAR Autism Network, TACA - Talk About Curing Autism, US Autism and Asperger Association and Unlocking Autism -- issued a position paper outlining their concerns with the so-called Safe Drug Compounding Act of 2007. The organizations' position statement can be found at http://www.nationalautismassociation.org

"As a mother and advocate for children with Autism, I am committed to ensuring our children have access to safe and effective treatments," said Wendy Fournier, president of the National Autism Association. "This legislation would have unintended consequences that would severely limit or completely deny access to the custom compounded medications that so many children rely on."


The organizations' concerns with the legislation center on the expanded authority it would give the Food and Drug Administration, which would restrict the availability of many commonly compounded medicines, some of which are prescribed to treat children with autism.


"Giving the FDA this kind of broad, unchecked authority is bad for patients," said Robert J. Krakow, president of A-CHAMP. "The FDA's current track record on food and safety overall is deplorable. Its track record on protecting children with autism is even worse. The FDA needs to do a better job protecting patients and consumers under existing authority before it can be trusted to take on more."


"We have an absolute epidemic of autism in this country," said Representative Dan Burton (news, bio, voting record) (R-Indiana). "Parents and doctors are struggling to find appropriate treatments options; and I personally believe that Congress has a responsibility to make sure that children with autism and their families receive the help that they need. Any legislation that unnecessarily limits medical treatment options is, in my opinion, deeply troubling, and potentially dangerous and should be opposed."


The groups will hold a conference call for reporters on Tuesday, May 1 at 11:00 AM EST. To participate, dial 800-351-4895, passcode: Autism.


For more information, visit http://www.nationalautismassociation.org.


CONTACT: Wendy Fournier of National Autism Association, +1-877-622-2884

List of Co-Sponsors for Autism Insurance Mandate Bill Introduced by Judy Robson

Here is a list of Senators and Representatives that have signed onto the insurance mandate legislation introduced by Judy Robson. If your representative is not on this list you need to call their office and really ask them why they are opposed to helping our kids. Also, if your legislator IS on there, call and thank them. You can look up your Wisconsin legislator at the side under my picture.

There has been some rumors up at the hill that this legislation is a "democratic" issue. We HAVE to let them know that our kids are not republicans or democrats they are kids who need the legislature to act on this issue.

According to Senator Robson's Health Policy Analyst, Nadine Gratz, we can expect the insurance industry to lobby intensely to defeat this bill. In order to win, we have to be VOCAL!

Senators
Judy Robson
Bob Wirch
Dave Hansen
Lena Taylor
Jon Erpenbach
Mark Miller
Julie Lassa
John Lehman
Fred Risser
Jim Sullivan
Pat Kreitlow
Kathleen Vinehout
Bob Jauch

Representatives
Mike Sheridan
Andy Jorgenson
Terry Van Akkeren
Chuck Benedict
Kim Hixson
Bob Turner
Dave Travis
Dave Cullen
Spencer Black
Bobby Gronemus
Frank Boyle
Christine Sinicki
Tom Nelson
Sondra Pope-Roberts
Bob Turner
Tamara Grigsby
Cory Mason
Al Ott
Mark Pocan
Leon Young
Gary Hebl
Joe Parisi
Donna Seidel
John Richards
Jen Shilling
Terese Berceau
Mary Hubler
Jaosn Fields
Jim Kreuser

Texans - Open Record Legislation Needs YOUR Help!

I strongly urge everyone to contact all Representatives on the State Affairs Committee regarding House Bill 3013 to oppose this legislation. This legislation will have a chilling impact on the ability of parents to acquire Open Records.

The Members of the State Affairs committee are:

Rep. David Swinford 512-463-0470
Rep. Ken Paxton 512-463-0356
Rep. Corbin Van Arsdale 512-463-0661
Rep. Wayne Christian 512-463-0556
Rep. Byron Cook 512-463-0730
Rep. Jessica Farrar 512-463-0620
Rep. Dan Flynn (800) 734-9515
Rep. Tan Parker (512) 463-0688
Rep. Marc Veasey (512) 463-0716

Louis Geigerman

Gavin’s 2nd Annual Benefit Concert for Autism

Saturday, May 12, 2007
Shoreland Lutheran High School
9026 12th Street (Hwys. E & H)
Somers, WI. 53171
Silent Auction and food 4:00-6:00 pm
A FREE WILL OFFERING WILL BE TAKEN AT THE DOOR
Please give generously.

Thrivent Financial for Lutherans will match funds.

Insurance Mandate: "It's kind of a no-brainer" - Nadine Gratz, Health Policy Analyst, Senate Majority Leader Judy Robson's Office

Today I had the pleasure of interviewing Nadine Gratz, Health Policy Analyst for Senate Majority Leader Judy Robson. We talked about Judy Robson’s reasons for introducing the bill that would mandate insurance coverage for autism treatment, and what concerned citizens, parents and advocates can do to help.

RJ Wood: What is the status of the bill introduced by Judy Robson mandating insurance coverage for autism treatment?

Gratz: Currently the bill is being circulated for signatures. So far we have 42 out of 132 legislators signing on, 13 senators and 29 reps.

RJ Wood: So there is bi-partisan support?

Gratz: No, not really. At this point we are working to get more legislators to sign onto the bill; it will be introduced on Thursday. Basically it is the same language as the Governor’s proposal.

RJ Wood: Why was the legislation removed from the Joint Finance Committee?

Gratz: The Joint Finance Committee regarded this as a policy item, not budget proposal.

RJ Wood: Why did Senator Robson introduce this legislation?

Gratz: Senator Robson is a nurse. So she has a very long standing, about 20 years total, of fighting very hard for a range of health care issues, and this is a natural extension.

She (Robson) was very pleased when she saw that the Governor had included this insurance provision in the budget, and when she saw that it was removed she wanted to keep it going. She is very concerned about the number of children being diagnosed, and she believes that early behavioral intervention can be so effective.

She brings this from her nursing background. She has always been a very firm advocate for prevention when possible, and early intervention, so this bill is an effort to get intensive care to children with autism at the time when it can be most effective.

From the perspective of a care giver it’s kind of a “no brainer.”

RJ Wood: Once the legislation passes the senate, what are the chances of getting it through the Assembly?

Gratz: It’s going to be very hard. At this point it remains to be seen how involved advocates for it will be, and how successful constituents are with their own legislators, and we know it will get a huge amount of pushback from the insurance industry.

RJ Wood: What are the best ways for families and other interested parties to help get this legislation passed?

Gratz: People that are affected need to speak out, and make tell stories in a compelling way so that legislators do not forget them (when they go to vote on the issue).

There is a strong commitment from the autism community and their families to this legislation. A good question to ask your legislator is: ‘if not this, what? If this isn’t the right bill, what is your response,’ and if their response is nothing, then people need to start sending them some strong message of ‘why are you in office then?’

Senator Hansen Supports Autism Mandate

Jay Wadd, Chief of Staff for Senator David Hansen, member of the Joint Finance Committee, in a conversation I had with him today, expressed that Senator Hansen believed that the proposal by Judith Robsen would be acted on swiftly and sent to the Assembly for a vote. He was unable to cite a specific time-line, but assured me that Senator Hansen was a supporter of this legislation.

Letter Asking for $15 Million in Defense Budget for Autism Research

The Honorable John P. Murtha, Chairman The Honorable C.W. Bill Young, Ranking Member
Appropriations Subcommittee on Defense Appropriations Subcommittee on Defense
Room H-149 The Capitol 1016 Longworth House Office Building
Washington, DC 20515 Washington, DC 20515

Dear Chairman Murtha and Ranking Member Young:

On behalf of the estimated 1.77 million American families affected by autism spectrum disorders (ASD, hereafter referred to as autism), we respectfully request that you provide $15 million in the Fiscal Year 2008 Defense Appropriations Bill for autism research. This program would be funded in the U.S. Army Research, Development, Testing and Evaluation Medical Advanced Technology account.

Many DoD families are touched by autism. The most recent prevalence data indicate that 1 in 150 children have an autism spectrum disorder. Based on this prevalence rate, as many as 12,000 children in military families (active duty, reserve and guard) may have autism. These families are affected substantially by the financial and emotional costs of raising a child with autism. Autism’s impact also extends to the performance and readiness of service members who have children with autism and their units. A service member with a child with autism may be restricted in terms of assignments and ‘deployability,’ thus potentially placing a higher burden on others who serve.

Moreover, the military life is particularly difficult for children with autism and their families. A specific feature of autism is extreme difficulty with life, routine, or environment changes of any kind. Therefore, these children need a set routine, stability, and continuity of services and relationships. Military life by its nature provides few of these needs. Frequent changes of residence and schools, and the prolonged absences of a parent make life much more difficult for the child with autism and his or her caretakers. When one parent is away, the spouse or other caretaker at home must bear both the normal burdens of that situation, and the additional challenge of raising a child with autism facing extraordinary stresses. This situation is likely to weaken the morale of the parent serving in the military as well as the caretaker at home.

For these reasons, we feel strongly that the autism epidemic warrants an additional investment via the Department of Defense. It is well known that children with autism, if they receive prompt treatment and early intervention services, can improve their long-term functional prospects dramatically. Additional research will help to improve treatment and intervention. The results will directly serve the interests of DoD families touched by autism as well as the medical, educational, healthcare and service professionals who serve the needs of the autism community within and beyond DoD.

With the number of Americans diagnosed as having autism or ASD continuing to rise at an alarming rate, Congress must redouble our commitment to increasing and enhancing the federal government’s contribution to autism research. Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a startling rate of 10-17 percent per year. At this rate, it is estimated that the prevalence of autism could reach 4 million Americans in the next decade.

Simply put, our government cannot afford not to make this additional commitment to autism research. Autism places tremendous health, financial, and emotional strains on our nation’s families, including those in the military, and the problem will only worsen unless an all-out research campaign is launched to discover causes, enhance therapies and, ultimately, prevent or cure autism.

We thank you for considering this most important request. If you have any questions or would like additional information, please contact Tim Lynagh in the office of Rep. Chris Smith (5-3765), Kenneth DeGraff in the office of Rep. Mike Doyle at (5-2135) or Peter Kay in the office of Rep. Carolyn McCarthy (5-5516).
Sincerely,

Letter to WI Own Dave Obey re: Funding for Combating Autism Act

The Honorable David Obey The Honorable Jerry Lewis
Chairman Ranking Minority Member
Committee on Appropriations Committee on Appropriations
U.S. House of Representatives U.S. House of Representatives
Washington, DC 20515 Washington, DC 20515

The Honorable James Walsh
Ranking Minority Member
Subcommittee on Labor, HHS, Ed
Committee on Appropriations
U.S. House of Representatives
Washington, DC 20515

Dear Chairman Obey and Ranking Members Lewis and Walsh:

We are writing to urge you, in the strongest possible terms, to fully fund the Combating Autism Act (“CAA”) in 2008.

Autism is increasing at epidemic proportions. According to the Centers for Disease Control and Prevention (CDC), it now strikes 1 in 150 of America’s children, making it more common than pediatric cancer, diabetes, and AIDS combined. It occurs in all racial, ethnic, and social groups. Autism impairs a person's ability to communicate and relate to others, and remains a life-long burden, not only for those who have been diagnosed, but for parents and other family members as well.
Late last year, Congress very appropriately responded to this crisis by enacting the CAA. For Fiscal Year 2008, the CAA authorizes a total of $168 million for a variety of critical autism activities, including: (1) $16.5 million for the CDCP to conduct its Developmental Disabilities Surveillance and Research program; (2) $37 million for the Secretary of Health and Human Services to carry out an Autism Education, Early Detection, and Intervention program; and, (3) $114.5 million for the Secretary and the National Institutes of Health to operate an Interagency Autism Coordinating Committee, implement the expansion, intensification and coordination of research on autism spectrum disorder, and fund and review autism centers of excellence.
Both the House and the Senate passed these authorizations unanimously. We urge you to make funding the implementation of the CAA an equally bipartisan and universally supported effort.

Thank you for your consideration of this important request. If you have any questions or would like additional information, please contact Kenneth DeGraff (Rep. Mike Doyle) at 5-2135, Tim Lynagh (Rep. Chris Smith) at 5-3765, or Peter Kay (Rep. Carolyn McCarthy) at 5-5516.

Sincerely,

Milwaukee Area Legislative Breakfast

This just in from Emily Levine at ASSEW:

If driving to Madison wasn’t an option for you and you live in Milwaukee County, you will have an opportunity to meet with your legislators in Milwaukee on May 18th. Make it Work! Milwaukee is a coalition of groups concerned with services for people with developmental disabilities, people with mental illness, and people who are aging within Milwaukee County. The People Can’t Wait Coalition (of which ASSEW is a member) and Make it Work! Milwaukee are sponsoring a legislative breakfast on Friday, May 18th, from 9 – 11 AM at the Exposition Center at State Fair Park. A flyer with details and registration information is available to download from our website. http://assew.org/LegislativeBreakfastFlyer.pdf Legislators and/or their staff will attend and attendees will be seated at tables with their state representatives, senators, or staff. To get “a seat at the table” you need to register. This is a fantastic opportunity to let your legislators know what issues are important to you as they continue their work on the budget for the next biennium.