Celebrate Autism Awareness Month with the ASA Picnic!

Annual ASA Family Support Picnic!
WHEN: Saturday, April 11th
WHERE: McCormick-Stillman Railroad Park,
7301 E. Indian Bend Road
TIME: 12:00 - 4:00 pm
LOCATION: Papago Ramada
(South End of the Park past the Tunnel)

ASA-Greater Phoenix will be providing GFCF Hamburgers, Hot Dogs, condiments, and paper products (plates, napkins, utensils). There are BBQ Grills and Covered Picnic Tables. Bathroom facilities are located nearby. There will be BOUNCERS and other fun activities for the kids as well as the train and carousel! This is a wonderful opportunity for our families to get together and socialize as well as network with other autism families in their communities.

We are asking families to bring an item to share by last name: A-H: Drinks/Water/Juice/ Soda, I-Q: Desserts, R-Z: Side Dishes. We encourage you to bring a GFCF or special diet item to share if your family follows one! Please RSVP by April 1st to Katie at Katie@phxautism.org or at 602-295-8062 so we have enough food for everyone!
Original link here

Right of the Month- March

YOU have the right to receive a full explanation of evaluations, assessments, supports, and services being offered, and/or any changes planned for your child, in your language or in your mode of communication, unless it is clearly not possible to give you the explanation in your language, before you give consent.

There are lots of listed commas in this sentence, but its pretty straightforward. Essentially, you have the right to have everything explained until you understand and before you are asked to consent. This also puts some of the responsibility back on the parent. If you don't understand the results of an evaluation, ASK before you consent. If you don't understand why services for your child are being changed, ASK before you consent. If English is not your preferred method of communication, you have the right to have a translator present. It can be one of your choosing or not, but you have to ASK. You are the parent (or guardian). Think of a doctor- you wouldn't consent to a test, medication, or hospital stay that you didn't understand. Its the same with services.

As a reminder, the full procedural safeguards are located here.

Right of the Month- Intro

All of this activity with the DDD/DES has made me re-realize how critical it is for parents and families to KNOW THEIR RIGHTS. As recent events have shown, families cannot depend on anyone else to look out for their interests. Politicians, support coordinators, and even providers may (or may not) mean well and try their best, but they have their own agendas, caseloads, and lives to look after. Ultimately, the only one who can ensure that you (as a recipient of services) and your child receive everything that you are legally entitled to is YOU.
When a family begins services with the DDD/DES, the support coordinator typically hands over a booklet and says, "here is a list of your rights and procedural safeguards. Please sign here to verify that you have been informed of your rights." Don't get me wrong- this isn't a hit against support coordinators. I've worked with lots of support coordinators and most of them go above and beyond to make sure that families are getting the best services possible. Like everyone else they are often overworked and underpaid, and explanations of rights can get tricky in any circumstance. Besides that, a lengthy discussion about legalities often isn't what the family is interested in right then. The expectation is that parents and guardians will read through the procedural safeguards booklet on their own time, but I'm sure we all know how likely that is. Most people don't think about that little booklet again until something bad happens.
So, because it is important for families to know what rights they have, the company I work for does something called a Right of the Month. Each month, we choose one right from the procedural safeguards booklet, print it out, and discuss it during home visits that month. Its not usually a lengthy discussion, but since there are 13 basic rights, in just over a year of service we cover all of them.
Basically, I'm thinking I could do the same thing here, and spotlight a right each month, along with a brief discussion. I'm looking to make this blog useful for parents navigating the birth-3 system in Arizona, in addition to keeping up to date with legislative happenings. Towards that end, if there is something related to Early Intervention that you would like me to blog about, feel free to comment or drop me an e-mail. I'm not a lawyer, so I probably couldn't help with those sorts of questions, but I'm open to trying to answer questions within my realm of knowledge.

For reference, the full procedural safeguards are listed here.

Thursday's Rally

I've been keeping an eye out for someone in blogland who attended the Capitol building rally on Thursday, and I finally found someone here. It looks like there was a good turnout.
If you have run across any other links or news stories related to the most recent rally, please let me know!

More info about CRS

Here is some more info about CRS from a press release by St. Joseph's Children's Health Center.

Update on Children’s Rehabilitative Services (CRS)

What is the Children's Rehabilitative Services (CRS) program?

· The CRS program is administered by the Arizona Department of Health Services (ADHS), and funds multidisciplinary medical services for Arizona children with special healthcare needs.

Who is Served by the CRS program?

· There are many special healthcare diagnoses that make a child eligible for the CRS program. Examples of eligible conditions include epilepsy, cystic fibrosis, spina bifida, congenital heart anomalies, muscular dystrophy, scoliosis, cerebral palsy, and cleft lip or palate. Children with such conditions are eligible for CRS from birth to their 21st birthday. Adults with cystic fibrosis or sickle cell anemia are also eligible for the program, if they meet certain financial criteria.

· Almost 21,000 Arizona children are currently enrolled in CRS.

How Does the State Pay for the Services Provided to These Children?

· The Arizona Legislature and ADHS, in collaboration with the Arizona Health Care Cost Containment System (AHCCCS) have historically funded CRS through a unique blend of Title 19, Title 21 and Title 5 federal dollars, and designated Proposition 204 and state General Fund dollars.

How are the New Budget Cuts Impacting Families?

· The budget cuts that were recently enacted by the state legislature will withdraw CRS coverage to about 800 patients, who fall within a “state-only” category of financial support. The savings to the state budget is between $700,000 and $800,000 through the end of this fiscal year. The coverage to these patients is supposed to stop on March 20^th.

· Patients are still medically eligible for the CRS Program, but they will now have to pay all their medical expenses. The costs are calculated at the existing AHCCCS rates.

· The average cost increase per family will be about $200-$300 per month per patient, but some families will now be required to spend thousands of dollars a month on prescriptions and medical care.

What are Providers Doing to Help These Families?

· APIPA is allowing some critical services to be covered through June 2009, including medications authorized prior to March 20 and post-operative care. Other special circumstances can be submitted for review by APIPA-CRS' medical director.

· After June 30, families will either have to find commercial insurance to cover the children or will have to spend down their financial resources until they become eligible for traditional AHCCCS coverage.

Who are the CRS providers? Where are CRS services provided?

· ADHS currently subcontracts its CRS service to APIPA in a statewide contract, with service delivery responsibilities located in four sites: Flagstaff Regional Medical Center in Flagstaff, Yuma Regional Medical Center in Yuma, and Children's Clinics for Rehabilitative Services in Tucson, and St. Joseph's Hospital and Medical Center in Phoenix. Other participating hospitals include Tucson Medical Center and University Medical Center in Tucson, and Banner Desert Children's Hospital and Phoenix Children's Hospital in Maricopa County.

· In addition, each of the CRS sub-contractors offers CRS outreach clinics in communities throughout their respective catchment areas. As examples, the Phoenix-area CRS program conducts outreach clinics in cities such as Prescott, Globe, Show Low, and Springerville; and the Southern (Tucson) CRS program conducts outreach clinics in Douglas, Nogales, Safford, and Sierra Vista.

The Children's Rehabilitative Services program organizes and provides uniquely necessary services for the most vulnerable of Arizona's children. Through its subcontractors, the CRS program provides coordinated medical, surgical and hospital care to a population of children that have very complex illnesses, typically requiring extensive specialty care for their entire lifetime.

Please help continue Arizona’s support for this extremely

vulnerable population of children.

Due Process Hearing Requests

This is some excellent info that I picked up on the AZEI Yahoo group about requesting a due process hearing. I am re-posting it with permission from the author, Maureen Casey.
Please note: this is not legal advice—if you would like legal advice you can visit the following websites to identify a lawyer: www.cadre.org, www.saarc.org, www.azbar.og

1. Parents want to file a complaint and request a due process hearing. (not a systems complaint which is more of an internal investigation by the agency. They want an impartial hearing officer appointed) 34 CFR 303.429 and 34 CFR 303.420 Have parents state that a hearing officer should be appointed and that the matter should be heard and decided within 30 days as required by statute. State that the child must continue to receive the appropriate early intervention services being provided under the last agreed upon individual family service plan as noted in AZEIP's own procedures during the pendancy of the due process proceeding.

2. The complaint should state that the child is a child with a disability and gi ve the child's age and services listed on service plan. A brief individualized factual summary would be appropriate here.

The complaint should include a written statement that the agency (DES/AZEIP) has violated IDEA Part C by failing to provide appropriate services for a child with a disability ages birth through 2 and list the services that the agency has proposed to eliminate or reduce.

If appropriate the complaint should state that the agency failed to provide the parents an opportunity to participate in a meeting where reduction or elimination of services was discussed and failed to provide the parents with prior written notice (PWN) or procedural safeguards. PWN is required anytime the agency proposes or refuses to initiate or change the ident ification, evaluation or placement of a child or the provision of services to the child or the child's family. Cite 34 CFR 303.403(a) PWN must include a statement by the agency of what action they propose to take or are refusing to take and the reasons for their action or refusal. This notice must be provided after a decision but BEFORE the action is taken to allow parents time to exercise their procedural safeguards. I might also state that the agency failed to establish a policy concerning payment for services and/or applied any new policy illegally and retroactively. (this applies to parents who were told they would now be charged increased fees for their child's services) Again, fill in with specific details such as the dates of notice, services proposed to be eliminated and state that the agency's decision is NOT based on the individual needs of the child but is arbitrary and based soley on budgetary concerns. Reference any evaluations or prior documents which state the services that the child needs to make progress in all areas of development. State that the agencies decision to eliminate or reduce services to the child is a direct violation of IDEA Part C.

3. Remedies sought should be continuation of services during the pendancy of the due process complaint (which should be 30 days); compensatory services or funding for any services misses or not provided and immediate approval for reinstatement of the services which were cut.

4. I would advise parents to write a letter requesting that they be allowed to review their child's record pursuant to FERPA. The agency must make the records available for inspection within 2 weeks of the request. Parents can't effectively pursue a due process hearing without a complete copy of the child's record.

Send the written request for due process and complaint to:

Molly Bright Part C Coordinator and Executive Director

Arizona Early Intervention Program

Department of Economic Security

3839 N. 3rd Street Suite 304

Phoenix AZ 85012

Important info for Parents

A speech-language pathologist who has been blogging about the DDD/DES cuts has a very informative post up about due process info, and sharing your Early Intervention story. Check it out here!

I second her recommendation to join the AZEarlyInterventionParents/Caregivers group on yahoo. There are several advocates and members of ICC who post, as well as parents and providers. This group has been extremely helpful to me in keeping up to date with everything going on in EI right now. You can read messages from their homepage, but in order to post to the group you have to sign up with a yahoo ID.