Right of the Month- April

Sorry this is so late...I've been swamped both with work and with issues on the home front.
The right of the month for April is...

To have your family's names, social security numbers, and all other personally identifiable information treated as confidential.

This means exactly what it sounds like it means. The DDD, doctors, and any therapists who work with your child consider personally identifiable information to be confidential. That includes names, birth dates, social security numbers, etc.
To see other Right of the Month posts, click on the tag at the bottom of this post.

It appears that the scheduled budget hearings did not happen today. They have been rescheduled for an indefinite future date. I'll try to update when I know more.

Important Action Alert!!

IMPORTANT BUDGET UPDATE!!! YOUR ACTION IS NEEDED!!

IT APPEARS THAT THE SENATE APPROPRIATIONS COMMITTEE WILL HEAR BUDGET BILLS THIS THURSDAY, APRIL 23, 2009 AT 9:30AM IN SENATE HEARING ROOM 109.

A NUMBER OF STRIKER BILLS HAVE BEEN PUT ON THURSDAY'S SENATE APPROPRIATIONS COMMITTEE AGENDA. HOWEVER, AT THIS TIME, LANGUAGE FOR THE BUDGET BILLS IS NOT AVAILABLE AND IT IS NOT CLEAR IF THE BILLS WILL ADDRESS THE ADDITIONAL SHORTFALLS IN THE RECENTLY APPROVED FY2009 BUDGET OR THE SIGNIFICANT FY2010 BUDGET DEFICIT (ESTIMATED $3 -$3.4 BILLION).

THE TIME TO ACT IS NOW!!!

THERE IS STILL TIME TO INFLUENCE THE PROCESS!!

IF YOU DON'T ACT NOW- LEGISLATORS WILL ACT WITHOUT YOUR INPUT AND MAY INADVERTENTLY MAKE DECISIONS THAT MAY HURT YOU AND YOUR LOVED ONES!!!!

WHY THIS IS IMPORTANT:

• As you know, services that people with disabilities and their families depend on sustained major cuts in the FY09 Budget solution and due to the state's continued economic crisis, there is an additional deficit that remains for FY2009 (estimated at $400-$500 million). Legislators will likely have to revisit the FY2009 Budget and may have to make additional cuts to critical state funded programs and services that Arizonans with disabilities and their families rely on.

• Legislators are ALSO trying to resolve and even GREATER deficit in FY2010 (approximately 2 times the deficit in FY09 ($3 - 3.4 billion).

• Although the federal stimulus monies may help the situation somewhat, the specifics are still somewhat unclear.

• Because of this, Legislators are desperately looking at ways to save the state money.

• That may include ADDITIONAL cuts to crucial services and programs that people with disabilities and their families depend on.

• It is likely that the Budget Bills scheduled to be heard in the Senate Appropriations Committee this Thursday will move quickly through the process which means that there is very LITTLE time left to advocate for the preservation of critical health and human services that Arizonans with disabilities and their families depend on.

IF PROTECTING CRITICAL HEALTH AND HUMAN SERVICES FROM DRASTIC BUDGET CUTS IS IMPORTANT TO YOU, THEN YOU NEED TO:

• Call and email the Senate Appropriations Committee Members before the Appropriations Committee hearing this Thursday, April 23, 2009 and encourage the Committee Members to advocate in the hearing for the preservation of critical services that people with disabilities and their families depend on for basic quality of life!!

• AFTER you contact the Senate Appropriations Committee Members, call and email your legislators and as many of the members of the Senate and House Leadership as possible. Encourage them to also help safeguard crucial services that people with disabilities and their families rely on.

• If you are working during the day and cannot make calls and send emails during regular business hours - then call and=2 0leave voicemail messages and send emails at whatever time you can. REMEMBER: Make the process work for you! Do anything and everything that you can.

• If you have an account with 'ALIS' be sure to sign-on online(on the day of the Senate Appropriations Committee Hearing, Thursday, April 23, 2009 before 9:30am) and leave your comments regarding Arizona's Budget.

• Get your friends, family members, neighbors, and acquaintances to do ALL of the above!!!

If you support this issue - What YOU Need to Say

* Briefly tell them your personal story. Explain how cuts would affect you and others.

Consider reminding them that:

* Thousands of Arizonans are Counting on them to address the budget deficit by identifying areas that do not cause irrevocable harm to Arizonans with disabilities and their families .

* That you'd like them to fight hard to preserve funding for critical services for people with disabilities

* Cutting health and human services is not eradicating luxury; it is eliminating life sustaining necessities.

* Addressing the budget deficit isn't just about numbers; it's also about assuring that Arizonans with disabilities are afforded the most basic human accommodation; shelter, food, health care, provision for mobility, education, employment, critical early intervention and rehabilitation services.

IN ADDITON TO YOUR LEGISLATORS, CONTACT AS MANY OF THE FOLLOWING PEOPLE AS YOU CAN:

Members of the Senate Leadership


President: Robert "Bob" Burns (R-9)
Phone Number: (602) 926-5993
Email Address: Rburns@azleg. gov

President Pro Tempore: Thayer Verschoor (R-22)
Phone Number: (602) 926-4136
Email Address: tverschoor@azleg. gov

Majority Leader: Chuck Gray (R-19)
Phone Number: (602) 926-5288
Email Address: cgray@azleg. gov

Majority Whip: Pamela Gorman (R-6)
Phone Number: (602) 926-5284
Email Address: pgorman@azleg. gov

Minority Leader: Jorge Luis Garcia (D-27)
Phone Number: (602) 926-4321
Email Address: jgarcia@azleg. gov

Asst. Minority Leader: Rebecca Rios (D-23)
Phone Number: (602) 926-5685
E mail Address: rrios@azleg. gov

Minority Whip: Linda Lopez (D-29)
Phone Number: (602) 926-4089
Email Address: llpoez@azleg. gov

Members of the House Leadership


Speaker of the House: Kirk Adams (R-19)
Phone Number: (602) 926-5495
Email Address: kadams@azleg. gov

Speaker Pro Tempore: Steven B. Yarbrough (R-21)
Phone Number: (602) 926-5863
Email Address: syarbrough@azleg. gov

Majority Leader: John McComish (R-20)
Phone Number: (602) 926-5898
Email Address: jmccomish@azleg. gov

Majority Whip: Andrew Tobin (R-1)
Phone Number: (602) 926-5172
Email Address: atobin@azleg. gov

Minority Leader: David Lujan (D-15)
Phone Number: (602) 926-5829
Email Address: dlujan@azleg. gov

Asst. Minority Leader: Kyrsten Sinema (D-15)
Phone Number: (602) 926-5058
Email Address: ksinema@azleg. gov

Minority Whip: Chad Campbell (D-14)
Phone Number: (602) 926-3026
Email Address: ccampbell@azleg. gov

Senate Appropriations Committee

Chairperson: Russell Pearce (R-18)
Phone Number: (602) 926-5760
Email Address: rpearce@azleg. gov

Vice-Chair: Al Melvin (R-26)
Phone Number: (602) 926-4326
Email Address: amelvin@azleg. gov

Member: Pamela Gorman (R-6)
Phone Number: (602) 926-5284
Email Address: pgorman@azleg. gov

Member: Ron Gould (R-3)
Phone Number: (602) 926-4138
Email Address: rgould@azleg. gov

Member: Sylvia Allen (R-5)
Phone Number: (602) 926-5219
Email Address: sallen@azleg. gov

Member: Paula Aboud (D-28)
Phone Number: (602) 926-5262
Email Address: paboud@azleg. gov

Member: Amanda Aguirre (D-24)
Phone Number: (602) 926-4139
Email Address: aaguirre@azleg. gov

Member: Rebecca Rios (D-23)
Phone Number: (602) 926-5685
Email Address: rrios@azleg. gov

Member: Albert Hale (D- 2)
Phone Number: (602) 926-4323
Email Address: ahale@azleg. gov

Member: Jack Harper (R-4)
Phone Number: (602) 926-4178
Email Address: jharper@azleg. gov

Member: Steve Pierce (R-1)
Phone Number: (602) 926-5584
Email Address: spierce@azleg. gov


House Appropriations Committee


Chairperson: John Kavanagh (R-8)
Phone Number: (602) 926-5170
Email Address: jkavanagh@azleg. gov

Vice-Chair: Andy Biggs (R-22)
Phone Number: (602) 926-4371
Email Address: abiggs@azleg. gov

Member: Steve Court (R-18)
Phone Number: (602) 926-4467
Email Address: scourt@azleg. gov

Memb er: Olivia Cajero Bedford (D-27)
Phone Number: (602) 926-5835
Email Address: ocajerobedford@ azleg.gov

Member: Cloves C. Campbell, Jr. (D-16)
Phone Number: (602) 926-3042
Email Address: clcampbell@azleg. gov

Member: Russell Jones (R-24)
Phone Number: (602) 926-3002
Email Address: rjones@azleg. gov

Member: Rich Crandall (R-19)
Phone Number: (602) 926-3020
Email Address: rcrandall@azleg. gov

Member: Matt Heinz (D-29)
Phone Number: (602) 926-3424
Email Address: mheinz@azleg. gov

Member: Nancy McLain (R-3)
Phone Number: (602) 926-5051
Email Address: nmclain@azleg. gov

Member: Rick Murphy (R-9)
Phone Number: (602) 926-3255
Email Address: rmurphy@azleg. gov

Member: Kyrsten Sinema (D-15)
Phone Number: (602) 926-5058
Email Address: ksinema@azleg. gov

Member: David Schapira (D-17)
Phone Number: (602) 926-3028
Email Address: dschapira@azleg. gov

Member: Vic Williams (R-26)
Phone Number: (602) 926-5839
Email Address: vwilliams@azleg. gov

Sally's Story, Part 2

*In order to make the initial DDD/EI referral process easier to understand, I am telling the story of "Sally" a fictionalized 2 year-old, and her family, as they work through the DDD referral process. Sally lives with her mom and dad, and her 6 month old brother. Dad works full time and Mom works part time. Sally and her baby brother stay with a babysitter 2 days each week while Mom works. Sally's parents are concerned because Sally is not saying any words. She is also very easily frustrated and "melts down" several times each day, both at home and at the babysitter's house. Sally does not seem interested in any of her toys, preferring to wave ribbons in front of her face, and line her teddy bears up in rows. When we last peeked in on Sally and her family, they had completed a DDD referral, and had an independent developmental evaluation. The evaluator judged that Sally was at risk for autism, and recommended that she begin early intervention services.

A week or so after the evaluation, Sally's parents receive a call from someone who introduces herself as a DDD support coordinator. The support coordinator tells Sally's parents that she has received the evaluation and would like to set up a meeting to write an IFSP and begin services. Still somewhat in shock, Sally's parents agree to a time for the support coordinator to come to their house.
When the support coordinator arrives, she explains that they will be writing an IFSP (Individualized Family Service Plan) to determine what Sally's strengths and needs are, and which services would be most beneficial. The support coordinator asks questions about Sally's daily routine, her skills, and the things that worry her parents. She also asks Sally's parents what they would like Sally to be doing in 6 months. Dad responds that he would like Sally to be talking, and not melt down so much. Mom replies that she would like Sally to notice and play with her baby brother. The support coordinator records this, then says that it sounds like Sally would benefit from speech therapy, as well as developmental special instruction (early intervention). She explains that in order for Sally to qualify for speech therapy she must have a specific speech evaluation first. Sally's parents sign a release form so that the support coordinator can share their file with other therapists, and they sign on the dotted lines that the support coordinator points out. The support coordinator gives Sally's parents a list of speech therapists and advises them to start calling and trying to find a therapist who can do a speech evaluation, and hopefully provide ongoing therapy. She shakes hands with Sally's parents, and leaves.
A week or so later, Sally's parents receive a phone call from someone who introduces herself as an early interventionist. She has received Sally's file and wants to begin therapy.

You can find my original post on getting started here, and Part 1 of Sally's story here.

Class Action Lawsuit Filed

The AZ Center for Disability Law announced a few days ago that they filed a class action lawsuit on behalf of all AzEIP eligible or potentially eligible children ages 0-3.
Here is an article at the ACDL website about the filing. You may have to create an account to read it, I'm not sure. Some excerpts from the article:
"Early intervention provides immediate and long-term benefits for children with disabilities and developmental delays,” said J.J. Rico, managing attorney for the Arizona Center for Disability Law. “During a child’s first three years, it is important to focus on a child’s developmental needs and take advantage of his or her natural ability to learn. Early intervention provides children with disabilities with the opportunity to learn everyday routines, including walking, eating and avoiding injury.”
“To our knowledge, Arizona is the only state who has approached the problem of reducing the state deficit by cutting eligible children with disabilities from critical early intervention services.” (emphasis mine)

Here is a link to the PDF of the actual lawsuit that was filed. There are three individuals named specifically, but the lawsuit also covers "all others similarly situated"
"It has long been recognized that “(E)arly experiences determine whether a child’s developing brain architecture provides a strong or weak foundation for all future learning, behavior and health1.... The period between birth and three years is a time of rapid cognitive, linguistic, social, emotional and motor development.2 Children who are not ready to learn when they enter kindergarten are more likely to struggle in elementary school, and are more likely to become teen parents, engage in criminal activities, and suffer from depression.3 For these reasons, early intervention services are essential building blocks for the future success of infants and toddlers with disabilities."

The lawsuit goes on to say that due process rights were violated when services were cut without regard to the needs of families or children who were receiving therapy. The plantiffs are seeking pendancy "stay put," as well as compensatory services to make up for those lost.
I'm particularly interested in the Statement of Facts section (starts partway down pg. 9 in the PDF). No matter how many times I read it, the fact that the state made such sweeping cuts to services for such a vulnerable population leaves me almost speechless. Keep in mind, the ONLY reason that kiddos are still getting services is that the judge issued an injunction. The state has appealed it- twice that I know of. Fortunately they've lost both times.
This was new to me:
"The State of Arizona, through Defendants, has a current contract with the U.S. Department of Education for a grant of federal Part C funds. The contract expires on December 31, 2009. In that contract, Defendants assure the U.S. Department of Education that, throughout the period of the grant award, they will “operate consistent with all requirements” of Part C of the IDEA." (emphasis mine)
The defendants, of course, are the DES. What catches my attention is that the contract with the US Department of Ed. expires at the end of 2009. In light of the budget issues, could the state simply opt not to renew that contract, and thus "get out" of having to provide services to kids ages 0-3? I really don't know. Federal law is law. Early Intervention is covered under Part C, which is part of IDEA (Individuals with Disabilities Education Act). IDEA is the law that governs special education in public schools. Schools can't simply "opt out" of IDEA and not provide services because of budget issues.
Sigh. After doing some further checking, it appears that it is possible that the state COULD indeed "opt out" of Part C. At least that's how I read it- I really hope I'm wrong. The text of the actual law is here (Part C starts about halfway down), but it doesn't specify whether the program is optional or not. Here's what I found on the Wrightslaw website- a very good resource for advocacy info btw.
"The Program for Infants and Toddlers with Disabilities (Part C of IDEA) is a federal grant program that assists states in operating a comprehensive statewide program of early intervention services for infants and toddlers with disabilities, ages birth through age 2 years, and their families. In order for a state to participate in the program it must assure that early intervention will be available to every eligible child and its family. Also, the governor must designate a lead agency to receive the grant and administer the program, and appoint an Interagency Coordinating Council (ICC), including parents of young children with disabilities, to advise and assist the lead agency. Currently, all states and eligible territories are participating in the Part C program. Annual funding to each state is based upon census figures of the number of children, birth through 2, in the general population."
So currently all states have Early Intervention in some form, but the exact services vary from state to state. If it is a grant program, though, then it stands to reason that the state could choose not to have EI, and forego that grant money. Again, I don't know this for sure (maybe someone else can clarify?), and I'm not trying to start a panic here, but that's where my train of thought is headed at the moment.
Right now, I think the only thing that can be done is hopefully what is already happening- attend meetings when they happen, talk to legislators, call, write, e-mail, etc. People who don't have kids with special needs don't realize how crucial these services are, and how much it benefits kids when they start EARLY. So keep talking!

Free Conference for Parents

Raising Special Kids
FREE

Conference for parents:

Learn collaborative strategies for therapy

Raising Special Kids is sponsoring workshops taught by professionals to aid families in helping their children learn and maintain skills.

Professionals from the fields of Occupational Therapy, Speech Therapy, Behavior Analysis and more will offer workshops to teach parents techniques they can use at home to help their child's progress.

Saturday, May 2, 2009
8:30 a.m. - 3:00 p.m.
Phoenix Children's Hospital
Cohen Rosenberg Building, Mel Cohen Conference Room
1919 E. Thomas Road, Phoenix, AZ 85016 · Parking available in adjacent parking garage

Space is limited, please register by contacting Raising Special Kids at 602-242-4366 or info@raisingspecialkids.org
(please put "Conference" in the subject line) with your name, phone and email.

Spanish translation available.

Public Notice for Comments

These are important issues, and these meetings are a good time for parents and families to comment on services and what is and isn't meeting their needs. The text below is a bit wordy, so I've tried to bold the important parts (meeting times/locations and contact info).

According to one parent, there are several proposals on the table that parents need to be aware of:
1. Families will be informed that their IFSP records will be kept for five years after their child leaves AzEIP.
2. AzEIP will institute a Family Cost Participation (FCP), this would require that families whose children receive services from AzEIP and DDD (but not ASDB) families making over 200% of the federal poverty level will pay 15% of the costs of their child's services (therapies, not service coordination, evalutions/assessme nts or IFSP development) and then it will increase by 5% to 100% of the costs.

The Department of Economic Security, Arizona Early Intervention Program (DES/AzEIP), is seeking public comment between April 3, 2009 and June 3, 2009 on the attached proposed FFY 2009 Application for
Federal Funds under Part C of the Individuals with Disabilities Act, including proposed changes to Family Cost Participation, General Supervision, and Procedural Safeguards policies.

PUBLIC NOTICE:
APPLICATION FOR FUNDS UNDER PART C OF THE INDIVIDUALS WITH DISABILITIES EDUCATION ACT
FEDERAL FISCAL YEAR 2009 (July 1, 2009-June 30, 2010)
The Department of Economic Security (DES), as the Lead Agency for Part C of the Individuals with Disabilities Education Act (IDEA), is seeking public comment on Arizona's draft 2009 Application for Federal Funds. The Arizona Department of Economic Security, Arizona Early Intervention Program (DES/AzEIP) will accept input on the application beginning April 3, 2009 until June 3, 2009. The application is for Arizona's early intervention program, a statewide program for infants and toddlers, birth to three years of age, with disabilities and their families. The participating State agencies include: the Arizona Department of Economic Security (DES), Arizona State Schools for the Deaf and the Blind (ASDB), Arizona Department of Health Services (DHS), Arizona Health Care Cost Containment System (AHCCCS), and the Arizona Department of Education (ADE). Persons submitting comments on specific items in the application should indicate support, opposition, suggested changes, additions, or deletions pertaining to the specific item. Input received by DES/AzEIP by 4:00 p.m. on June 3, 2009 will be considered. The draft application will be available at www.azdes.gov/AzEIP. If you are unable to access the application electronically, please contact DES/AzEIP at (602) 532-9960; toll-free at (888) 439-5609, or by email at AllAzeip2@azdes. gov.

The Department of Economic Security, Arizona Early Intervention Program (DES/AzEIP) will conduct public comment hearings on the draft 2009 Application for Federal Funds, at the following locations and dates:

Phoenix May 8, 2009
2:30-3:30 p.m. AZ DOT - HRDC
Grand Canyon Rooms 1&2
1130 N. 22nd Avenue
Phoenix, AZ 85009

Flagstaff
May 26, 2009
2:00-4:00 p.m. East Flagstaff Community Library Meeting Room
3000 N. Fourth Street, Suite 5
Flagstaff, AZ 86004

Phoenix
May 27, 2009
4:00-6:00 p.m. Yucca Library Meeting Room
5648 N. 15th Avenue
Phoenix, AZ 85015

Tucson
May 28, 2009
4:00-6:00 p.m. Himmel Park Branch Library Meeting Room
1035 N. Treat Avenue
Tucson, AZ 85716

Oral and written comments will be accepted at the public hearing.
Written comments may also be mailed to DES/AzEIP, 3839 N. 3rd Street,
Suite 304, Phoenix, AZ 85012; or emailed to allazeip2@azdes. gov.

Thank you in advance for your careful consideration and comments.

Arizona Early Intervention Program
3839 N. Third Street, Suite 304
Phoenix, AZ 85012
602-532-9960, toll free 888-439-5609
fax 602-200-9820
WWW.AZDES.GOV/ AzEIP