So what do you do if your state passes autism legislation (as my state, New Jersey, did in September of 2007) and then it gets stalled by budget cuts—-when the bill gets passed but there’s no funding as it’s an austere buget year” ? In Florida, the Window of Opportunity Act was passed by the Senate last week—and today’s Palm Beach Post reports on the hurdles it now faces in the House:

State House leaders acknowledged Monday that the state doesn’t have the money to have Medicaid and Healthy Kids cover all Florida children with autism. But they still oppose the Senate plan that would immediately require private health insurers to cover autism treatment.

Instead, the House wants to “put a mechanism in place” to have autistic kids get coverage through Healthy Kids whenever the money becomes available.

According to Rep. Aaron Bean, R-Fernandina Beach, who headed a House task force on the issue, is proposing another bill, which would “only require insurers to provide autism coverage if the state could not come to an agreement with insurers in two years on how best to cover the children.” The current Senate-backed plan does not, Bean says, cover families with autistic children who “work for self-insured companies which make up about 43 percent of Floridians.”

A South Florida mother commented on an earlier post about the Florida bill that “it will also be a miracle if these bill pass. Similar ones have been introduced here before, only to die.” As I’m reading about the new autism legislation announced today by NJ Senator Robert Menendez, the Helping HANDS for Autism Act, I have her words in mind, and also that

“I for one am making calls to my local politicians to try to show my support.”

Below is the press release about the new autism legislation that New Jersey Senator Robert Menendez unveiled this morning in Weehawken, in Hudson County in northern New Jersey. The legislation has three parts: The creation of “autism navigators” to help families “navigate” their way through services, treatment options, and much more; the development and implementation of autism training for first responders (police, fire departments, emergency medical technicians and other volunteers); the creation of an HUD Task Force to address the “serious lack of sufficient housing” for autistic adults. The legislation is specifically about services and community supports.

The need for housing for autistic adults is underscored in a story from KGW.com in Washington state. 41-year-old Ronny Johnson has autism and was until recently cared for by his now-65 year old father, Ron Johnson. Ronny Johnson only received a Core Waiver—a special state program that provides funds for high-level care of the type he requires—-after his father needed bypass surgery and was simply unable to take care of his disabled adult son any more (his wife, Carole, had died of cancer in 1994). The family had simply not known about such a waiver. Said another of Ron Johnson’s, Scott:

“Dad said it felt to him they had this special treasure they never told him about before, and they let him in on the secret only when he couldn’t take it any longer,” Scott said.

When, that is, it might be too late.

Here is Sen. Menendez’s autism legislation package:

AS AUTISM AWARENESS MONTH DRAWS TO CLOSE, SEN. MENENDEZ UNVEILS PLAN TO SUPPORT FAMILIES DEALING WITH AUTISM
-Three-part legislative package includes program to guide families seeking services and care, public awareness and housing for adults with autism
-New Jersey has highest rate of autism – 1 in 94 children

WASHINGTON – U.S. Senator Robert Menendez (D-NJ) unveiled new legislation today to support families dealing with autism spectrum disorders. Senator Menendez was joined by the groups Autism Speaks and the New Jersey Center for Outreach and Services for the Autism Community (COSAC), as well as local parents of autistic children, in announcing the plan, which comes as Autism Awareness Month draws to a close.

The Helping HANDS for Autism Act is a three-part legislative package that includes a program to guide families seeking services and care, increased public awareness and housing for adults with ASD. At 1 in 94 children diagnosed with ASD, New Jersey has the highest rate in the nation.

“As a society, we have to make sure that our autistic citizens and their families never feel abandoned or ignored by the community,” said Senator Menendez. “Families dealing with autism should have a helping hand if they want one, and that’s the purpose of these programs – so that we can be there for them. New Jersey families are touched by autism spectrum disorders more often than families anywhere else, so any nationwide autism program like this will end up helping our state tremendously.”

“Each of the three titles included in this legislation offers an important opportunity to address an area of concern for families affected by Autism,” said Elizabeth Emken, Vice President, Government Relations, Autism Speaks. “Autism Speaks thanks Senator Menendez for his leadership in helping families face the challenges associated with autism”.

“Nothing is more important to families then to know their government understands the issues they’re facing and to present solutions to aid them,” said Leslie Long, Director of Public Policy and Systems Advocacy COSAC. “Senator Menendez has empowered the autism community through his impactful legislation.”
###
Helping HANDS for Autism Act of 2008
Sponsored by Senator Robert Menendez
An Act to Increase Housing, Awareness, and Navigation Demonstration Services (HANDS) for Individuals with Autism Spectrum Disorders

Title I: Autism Navigator
The Helping HANDS for Autism Act creates a grant program to provide autism navigator services to help families of individuals with autism spectrum disorders ‘navigate’ the complex, fragmented, and often confusing web of services and care that they need. Navigators will help guide families to current health, education, housing and social services that are often available to individuals in the autism spectrum. Too often families feel overwhelmed after diagnosis and often lost as to where to turn for help. For example, this program will help connect families to important treatment options soon after diagnosis, help families identify education options, help coordinate individuals’ care and community support. This program would provide a trained, knowledgeable hand to help families from the moment of diagnosis throughout their child’s development.

Title II: Autism Awareness
This bill provides for the development, demonstration and dissemination of a standard curriculum for the training of first responders (police, fire departments, emergency medical technicians and other volunteers) in assisting individuals with autism and other cognitive behavioral disabilities. It provides grants to states and local government to support training of first responders. People with developmental disabilities, including autism, have up to seven times more contact with law enforcement officers than others, according to an article in the F.B.I. Law Enforcement Bulletin in April 2001. That is why training is so important. Something as simple as first responders turning off flashing lights and sirens on a police car could make the difference between a peaceful or chaotic encounter.

Title III: Home of Their Own
This bill also addresses the serious lack of sufficient housing for adults with autism. It creates a HUD task force comprised of appropriate national and state autism advocacy groups, community-based organizations and parents who are charged with developing a housing demonstration grant program for adults with autism. The goal of the grant program is to provide individualized housing and services to adults with autism spectrum disorders.

Supported by:
Autism Speaks
New Jersey Center for Outreach and Services for the Autism Community (COSAC)
The Daniel Jordan Fiddle Foundation

Senator Robert Menendez of New Jersey will be announcing a new initiative for families dealing with autism spectrum disorders on Monday, April 28th, at 11am in Louisa Park in Weehawken, New Jersey. The legislation will combine guidance for families seeking autism spectrum disorder services and care, greater public awareness of autism spectrum disorders and support for adults with autism. New Jersey has the highest prevalence rate of autism in the nation (1 in 94). I was was hoping to be in Weehawken which is not far from where I teach at Saint Peter’s College (it’s the Senator’s alma mater) but I have a class (and it’s the last week of classes). You can be sure my thoughts will be directed down Kennedy Boulevard……

Ever felt like you’ve been caught between a rock and a really hard place? And in particular (if you are a parent like me) trying to arrange and rearrange your finances to provide therapies for your autistic child?

Parents of autistic children in Wisconsin like Cindy Brimacombe have found themselves in such a situation in the wake of the state’s Legislature leaving bills that would have affected how services for autistic children are funded and delivered “by the wayside,” as the March 16th Milwaukee Journal Sentinel reports. Republicans and Democrats both had differing plans to help autistic children but were unable to compromise:

Brimacombe said she wished the two sides had been able to pass a bill helping children like hers. She preferred the autism bill promoted by Democrats, which would have required all insurers to cover intensive in-home autism therapy.

Because insurance won’t cover that therapy, Brimacombe is spending about $1,000 a month out of pocket for the therapy. But she can’t get as much therapy for Max as she wants because if he gets too much, he’ll be bumped off the waiting list for the state program.

Assembly Republicans objected to the insurance mandate and proposed instead spending $6 million more on the program to eliminate the waiting list. Brimacombe said she didn’t like that bill as much because others would likely wind up on the fast-growing list.

Autism researchers say the key to success is getting children into therapy as early as possible.

Brimacombe spent months getting her son diagnosed and signed up for the waiting list. She said Max is expected to get state-paid therapy in January, more than two years after she noticed problems.

Getting various therapies (ABA, speech, and occupational therapy in the case of my son Charlie) early on (from the time that he as about 2 years old) and quite intensively did make a huge difference for my son. They also helped my husband and me overcome feelings of helplessness and panic as we saw Charlie make small gains — sitting in a chair without crying, learning to ask for a cracker using sign language — and as we learned that we could help Charlie learn to do things. The wait for services is agonizing but one thing we’ve learned is that the “key to success” involves something more than “getting children into therapy as early as possible.” This can be part of it, but autism is a lifelong condition and there is much that son has learned and been able to learn as he has gotten older, over time.

In other words, while it might feel that one is caught between that proverbial rock and that hard place, living with Charlie and learning to learn how he learns best have taught me that I can maneuver myself out and not stay stuck. I can learn new ways to teach him and to understand his difference communication (such as the multiple meanings he ascribes to yes and no)—I can move rocks and, through patient and long hard work, legislators too. At least, I’m trying to support and get autism legislation passed here in New Jersey—knowing the other parents and autism advocates that I know, no autism legislation gets left “by the wayside” permanently.

The New Jersey State Senate narrowly approved legislation on Monday that would make the state the third in the nation to grant employees the right to take paid leave to take care of a newborn or sick relative. The bills now goes to the Assembly and is expected to be approved on March 13; Governor Jon S. Corzine has said that he will sign the bill. From the New York Times:

The measure would be financed by employee payroll deductions that would cost every worker in New Jersey a maximum of 64 cents a week, or $33 a year. Those taking the leave would be eligible for two-thirds of their salary, up to a maximum of $524 a week, for six weeks. The benefit falls short of the $917 a week that California offers but is more than double what Washington State will offer starting next year.

Myself being sick, it’s not easy in taking care of Charlie, but there have also been times when he has been sick, or when he has so many problems at school that we had to take him out of school. Being able to take a leave from work would have been extremely helpful. I’m not sure the new measure would apply to a parent who has to take off from work to take care of an autistic or disabled child,though not physically sick, is not able to go to school for a period of time, but a measure like this could help a family in a tough spot who feels as if they have few, or no, options.

I’ve noted that being sick has been made slightly more manageable by Charlie himself being able to help out more and to be more responsible for himself: Last night, this showed in the little things, as Charlie helped make his own lunch and pushed open doors at the pool; we practiced piano together and then he had kept himself busy clicking to see the photos on his computer, occasionally calling “Mom!” (When he saw me with a tissue, he told me “Mom sneeze, Mom atchoo!”, and I have to say I complied with his words.) It’s all the efforts we’ve been able to make when we, and Charlie, have been well that have resulted in him being able to manage in so well these past few days.

Still touching his forehead from time to time to see if he feels hot………

Education and advocacy. Education and advocacy and legislation, and how to make these happen in order to make a real and practical impact on the lives of autistic persons and of their families in New Jersey, and how COSAC—–the New Jersey Center for Outreach and Services for the Autism Community—might best achieve this: This was what was talked about at the COSAC Strategic Planning retreat that I was fortunate to be present at for most of Saturday. A lot of the conversation was about the needs of autistic adults and especially about housing, and about how COSAC might best focus its efforts. A good deal of talk was about the autism bills that have been passed in New Jersey, and that have yet to be voted on—-and on how to make sure that the programs and services spelled out in the bills are actually implemented. (The New Jersey Adults with Autism Task Force has yet to meet, for one thing.)

I met a lot of people—parents and advocates for autisitic persons—whom I’ve long admired and learned a lot, and spoke up, keeping in mind what I’ve learned from everyone here.

I didn’t say as much as I might have, though: A cold that started Thursday night became laryngitis by the end of the Strategic Planning retreat and, soon as I got home, I made myself some Chinese sugarcane tea and lay down on the couch. Charlie and Jim had had a happy, easy-going day: Sleeping in, visits to Home Depot and McDonald’s, throwing the basketball back and forth.

It was another good day, and a good life, with Charlie.

The Wisconsin Senate has passed a bill requiring insurance companies to cover autism, but the bill still has to pass the state’s Assembly. And in Oklahoma, families with autistic children are calling on the state Senate to pass “Nick’s Law, which would require health insurance policies cover diagnosis, treatment and therapy for autism spectrum disorders.

Here in my own state of New Jersey, the state Assembly’s Health and Senior Services Committee has released six new autism bills on Monday; last September, New Jersey Governor Jon seph S. Corzine signed a package of seven bills relating to autism; go here for details about the bills. The new “second phase” of autism bills calls for: insurance coverage for treatments (applied behavior analysis or ABA); creation of a new office to handle autism-related issues in the Department of the Public advocate to pair families with services and also of a one-stop shop autism Web site to make it easier for families in-need of assistance; creation of a special identification card in the case of emergencies for autistic residents; supporting choice in housing by supporting autistic adults who have aged out of the juvenile system living independently with assistance; and calls for the creation of new peer-programs to partner students and autistic classmates to foster social interaction among all students in middle and high school. But will these new measures take away funding and supports from others with developmental disabilities, asks the assistant executive director of the Arc of New Jersey in the Courier Post Online?

Last September, New Jersey Governor Joseph Corzine signed a package of seven bills relating to autism; go here for details about the bills. Next Monday, the New Jersey State Legislature will consider a second round of autism bills, again sponsored by Assembly Speaker Joseph Roberts, D-Camden. Under the new legislation, New Jerseyans with autism would have their own government advocate, insurance coverage for promising treatments, help with living arrangements, and a student peer program for students in grades 7-12 to interact with autistic students. Today’s Bergen Record provides specifics—-am glad to be here and home in Jersey. Read more