Saturday, December 19, 2009

Possible News Story

from here.
"I just got word that 12 News is looking to do a story on Early Intervention Services if the funding cuts go through the legislature. They are looking for families willing to interview with their children on camera. If anyone is interested please contact Melissa, her email is

mblasius@12news.com "

Please contact Michelle at Fighting for My Son's Services in AZ with questions.

Friday, November 20, 2009

Please, please e-mail or call your legislators!

A co-worker of mine attended a meeting at the State Capitol the other day regarding budget cuts to services for individuals with disabilities. She was informed that legislators are waiting to hear from citizens about the proposed budget cuts, and in fact are KEEPING COUNT of how many people oppose them. It is imperative that legislators hear from people who will be affected by these cuts. TELL them about your child, and how he or she benefits from early intervention. TELL them that losing these services would harm your child and family.
Here's the link to contact info for each representative. Please contact at least ONE.
http://www.azleg.gov/MemberRoster.asp

Tuesday, November 3, 2009

Update from Raising Special Kids

about CRS.

Raising Special Kids
ACTION ALERT

November 3, 2009

What's next?


Dear Friends and Families:

This week, 2,000 parents of children with disabilities and special health conditions are receiving letters from APIPA. These families are being informed that their eligibility for CRS services has been terminated. This is not like the previous letter, moving families into 100% self-pay status, this means their eligibility to use CRS services has ended.

As the budget crisis deepens, the ability of the state to provide for its most vulnerable children is being tested as never before.
We all have a stake in seeing that our elected representatives understand the critical nature of these services for children with disabilities and special health needs. Without access to health care services and the ability to manage serious and chronic medical conditions, more children suffer needlessly, become more severely affected by their disability, and have a less favorable prognosis. What is the legislature doing to see that the state meets its basic obligations to children for health, education, and essential services? And what program is on the next list of cuts?

Find your legislators and their contact info at http://www.azleg.gov/


Please refer to our website www.raisingspecialkids.org or contact us at 602-242-4366, Toll Free 1-800-237-3007 or info@raisingspecialkids.org

For additional advocacy tips and support visit http://www.pafcoalition.org/

Tuesday, October 27, 2009

AZ budget info....again

I know I've neglected this blog for the past few months. I've been busy working with kids, doing a few projects, and actually taking a vacation. However, this DRAFT of a budget crossed my radar today and I thought I'd share.
https://egov.azdes.gov/cms400min/uploadedFiles/Office_of_Communications/fy2010_budget_review_15_percent_reduction.pdf
I know its long, but it isn't terribly dense. Read or skim it all, even if you have to do it in multiple sittings. Keep in mind that this isn't set in stone, but it is a bit worrisome. Page 35 discusses possible restriction/elimination of Early Intervention, and specifies that this would cost the state its funding from IDEA part C. Here's a little takeaway quote for you:
"However, Arizona already falls into the “narrow” band of early intervention eligibility nationally and it is uncertain whether the federal government would approve a stricter standard. If federal approval could not be acquired, the state would no longer receive IDEA Part C funds and would not have the obligation to provide early intervention services through state funds. Children eligible for ATLCS would be unaffected, but the other 9,100 children (on an annual basis) may lose their services. Even for those who continue to receive services though their health plans, services may be difficult to access, time-limited, and uncoordinated across disciplines. The savings estimate for this option assumes the loss of the federal Part C grant, though the Department obviously prefers a solution that maintains the grant while reducing the pressure on state funds."
That section goes on to describe the benefits of early intervention, and the impact that would come from eliminating it.

Read, call, write, post

Sunday, July 26, 2009

Good info :)

Code Adam is an in-store procedure that quickly finds lost children. If the child is not located within 10 minutes, the police are called to assist in finding the child. Thanks to Code Adam, many children have been reunited with their loved ones.

Here's how it works. The moment you discover your child is missing, alert an employee, giving information like age, name, height, hair style, clothing, and most importantly, the shoes your child is wearing. Kidnappers are less likely to be able to change your child's shoes to disguise your child. Once that employee pages a Code Adam, all employees drop what they're doing to search for the missing child. All external doors are guarded, and every child that matches the description is approached to determine if the child is yours. If your child is found, accompanied by another adult, reasonable efforts to delay their departure are taken without putting the child, staff, or visitors at risk while law enforcement is notified of the situation including a detailed description of the adult.

Not all stores support Code Adam. Upon entering a store, check the front door/window for a blue sticker that says Code Adam (a picture of the sticker can be found at the above linked article).

Tuesday, July 14, 2009

Autistic meltdown vs. temper tantrum

Found this on another website and thought it was interesting. Here are some characteristics of a temper tantrum, versus an autistic meltdown:
Temper tantrum
"A temper tantrum is very straightforward. A child does not get his or her own way and, as grandma would say, "pitches a fit." This is not to discount the temper tantrum. They are not fun for anyone.
Tantrums have several qualities that distinguish them from meltdowns.
* A child having a tantrum will look occasionally to see if his or her behavior is getting a reaction.
* A child in the middle of a tantrum will take precautions to be sure they won't get hurt.
* A child who throws a tantrum will attempt to use the social situation to his or her benefit.
* When the situation is resolved, the tantrum will end as suddenly as it began.
* A tantrum will give you the feeling that the child is in control, although he would like you to think he is not.
* A tantrum is thrown to achieve a specific goal and once the goal is met, things return to normal."


Autistic meltdown
"* During a meltdown, a child with autism does not look, nor care, if those around him are reacting to his behavior.
* A child in the middle of a meltdown does not consider her own safety.
* A child in a meltdown has no interest or involvement in the social situation.
* Meltdowns will usually continue as though they are moving under their own power and wind down slowly.
* A meltdown conveys the feeling that no one is in control.
* A meltdown usually occurs because a specific want has not been permitted and after that point has been reached, nothing can satisfy the child until the situation is over.
"

My only disagreement with this is that I have definitely known kids with autism who would throw true temper tantrums. The intention was very definitely to manipulate. I've had other parents of kids with autism tell me the same thing- many of these kids are "capable" of using tantrums (that appear similar to meltdowns) to try and get their way.

Monday, June 29, 2009

Steven's Law

Steven's Law is going to be effective this Wednesday, July 1. The question is, will your child be eligible for autism-related insurance coverage. See the step by step guide below for help.

1. Ask the Company/Human Resources Dept. (HR) for whom you work (where you receive your health benefits/insurance) if the plan your family has is a “Self Insured Plan.” If they tell you “Yes” – you are not eligible for benefits under Steven’s Law. If they tell you “No” go to step # 2.
2. If you do not know or are unsure, ask the HR Department if the company has 50 or more employees. If they tell you “No” than you are not eligible for benefits under Steven’s Law. If they tell you “Yes” go to step #3.
3. Ask the HR Department where/in which state your Insurance Plan is “underwritten.” If your plan has been underwritten in any state other than Arizona you may not be eligible for Steven’s Law.
4. Call your insurance company and ask for “Member Benefits.” Ask if they (Customer Service) are familiar with Arizona’s Steven’s Law/Autism Coverage.If they tell you “No” ask to speak to a Supervisor and ask the Supervisor the same questions.
5. If they tell you “Yes” ask them if your family (your child) is eligible for the benefits under your plan.
6. If they tell you “No” ask them why/what the reason is, and then tell them you want the reason you do not have coverage sent to you in writing.
7. If they tell you “Yes” request a list of “Network or Contracted Providers” or “Preferred Providers” for your area. This will give you all of the agencies and/or individuals who are contracted with your insurance company to provide services outlined by Steven’s Law.
8. Because some Companies have elected to offer this coverage when they are not required to, call your insurance company and ask even if you think you are NOT eligible. If they tell you that you ARE eligible, request it in writing before you make any appointments etc.

From here.

Monday, June 22, 2009

You're Not Listening rally June 23rd

CALLING ALL CONCERNED

The “You’re Not Listening!” event takes place TUESDAY, June 23. This event will have a different feel/appeal than what has been done in the past.

There has been marching, rallying, chanting, singing, moments of silence, emailing, phone calling, meeting with your legislators, articles in the news, letters to the editor, interest stories on the news/tv and the list goes on… These efforts HAVE made a difference. A judgment was awarded resulting in 69 days without budget cuts and restoration of non-title 19 funded services – so far; restoration of Early Intervention Services and a renewed sense of urgency and attention to the disabled population. But we cannot stop there. We need assurances for our children well beyond the age of 3. Our State government is NOT LISTENING to our cries for justice for ALL disabled citizens.

Therefore think visual, symbolic, strong messages that convey images, feelings and thoughts, to other participants. Our focused target group is the Governor, Legislators, the press/media and passersby.

Ideas…Suggestions…

  • Earmuffs representing you’re not listening/hearing us
  • Trace two hands together and “cut” off one finger – representing a loss of 10%

**Place your name, address, phone number on the back for delivery to Governor/Legislators**

  • Group of 100 people, 90 in white shirts, 10 in black.
  • Candlelight Vigil – 100 candles, 10 not lit

We need large banners like bed sheets, bolts of cloth with statements representing what “You’re Not Listening” means to you and the individuals you serve. Use your body as a billboard – wearing white t-shirts with your message of “You’re Not Listening”. Or depict thoughts and feelings about being developmentally disabled – that it is a challenge in itself - having to justify that disability - having to justify necessary life supporting services - having to settle for anything less than whole is an injustice – merciless - acts of violence (another train of thought).

Timelines…..this is an estimate, details will be sent Monday 6/22/09

11:30a – Governors tower

12:00p – Press Release House Lawn

12:30p – House of Representatives

1pm – Senate

Prayer/Candlelight Vigil – 7pm-9pm

As Tom stated in his last email, “I am begging each of you to put aside any differences and work together to fight the extremely destructive appropriations that will hurt people with disabilities, their families and providers of service for years to come, if they are approved as currently recommended. We would love to see you next Tuesday and we hope you will support our efforts to get our Governor and Legislature to listen to our plea.”

Please forward this notice, as well as future notices, to anyone you think might be potentially interested.

Saturday, June 13, 2009

AHCCCS Eligibility Policy Manual

There is a new link to the AHCCCS Eligibility Policy Manual. You can find it here as a PDF.
This includes the AHCCCS questionnaires and scoring instructions that are used to qualify children.

Wednesday, June 10, 2009

Right of the Month- June

To withhold family information from your records or discussions with service providers.

I've heard from many families in service that between intakes, evaluations, doctors, and therapists, they feel like they recite their family and child's history...several times over. As a therapist, I can say that the more I know about your family and child, the better I can assist you. However, this has to be balanced against the family's need for (and right to) privacy. Ultimately, the line is drawn differently for each family, and with each professional, and I would love to hear about how any readers have decided to draw those lines.

For other discussions of rights, click the right of the month label.

Wednesday, June 3, 2009

Supreme court to hear budget cut challenge

Supreme Court to hear budget cut challenge
By Howard Fischer
Capitol Media Services


The Arizona Supreme Court turned aside two requests Monday by state agencies to block the Legislature from cutting their funds but agreed to hear arguments on a third.

Without comment, the justices rejected efforts by organizations that provide care to the developmentally disabled to force the Department of Economic Security to restore funds for services to the developmentally disabled.

In a separate order Monday, the justices refused to consider claims by the Industrial Commission of Arizona that the Legislature illegally took some funds from the agency to balance the state budget.

The rulings are most immediate a victory for the state which, for the time being, doesn't have to spend any more money.

But the high court did agree to hear arguments at the end of this month on a claim by First Things First that it was illegal for lawmakers to take more than $7 million from the account of that program approved two years ago by voters.

All three lawsuits are a direct outgrowth of a move by lawmakers in January to deal with a $1.6 billion deficit.

Legislators sought to balance the budget in part by "sweeping'' money from special accounts held by various state agencies. All totaled, lawmakers took more than $500 million.

That included $7 million in interest accumulated by First Things First, a program approved by voters in 2006 to add an 80-cents-a-pack tax on cigarettes to fund programs for early childhood development. By law, the tax proceeds are off limits. But legislators insisted they could take the interest that was earned off the money.

The high court agreed Monday to consider arguments that the raid was illegal.

The justices, however, refused to consider a similar claim by the Industrial Commission that taking $4.7 million from its special accounts was illegal.

In a petition to the Supreme Court, attorneys for the commission said the funds constitutionally can be used only to benefit injured workers, their employers and the companies that provide workers' compensation insurance, "not the general public.'' They also said the sweep amounted to "an unconstitutional taking of private property ... without just compensation.''

But attorneys for the state said there was nothing special about the commission's funds, allowing lawmakers to tap the cash when needed.

In Monday's action, the Supreme Court simply refused to hear the arguments.

That, however, does not end the matter. The commission is still free to file a regular lawsuit in Maricopa County Superior Court and try to make its case there.

The third lawsuit stems from the order by lawmakers in January that DES reduce its spending by about $150 million. That agency, in turn, cut payments to individuals and others that provide services to the developmentally disabled by 10 percent.

DES also eliminated services for people who are moderately developmentally disabled who, with support, can work in the private sector. Also cut was funding for early intervention services for 2,000 children, from birth through age 3, who are at risk for becoming developmentally disabled.

A trial judge blocked the move in March, ruling DES had acted illegally, blocking the cuts.

But the Arizona Court of Appeals last month said the evidence showed the agency had done nothing illegal and allowed DES to proceed with the reductions. Monday's Supreme Court decision upholds that ruling.

From here.

Saturday, May 23, 2009

Free Anat Baniel clinic

Anat Baniel Method for Children with Special Needs
Come learn about the Anat Baniel Method on June 7th from 10am-4pm at

Millennium Martial Arts School

91st Avenue & Peoria Avenue

(Next to Peter Piper Pizza)

9976 N. 91st Ave, B-110

Peoria, AZ 85345

What is the Anat Baniel Method?

The Anat Baniel Method expands on the work of Dr. Moshe Feldenkrais. It is a non-medical, learning based approach that uses gentle touch and movement to enable the child with special needs or a learning disability to improve physically, mentally and emotionally. It asks children to move only in ways which are within their true capabilities, creating a feeling of safety, encouraging a willingness to expand into new abilities. Practitioners certified in this method provide learning experiences that help children develop beyond their limitations. Infants’ and children’s progress often surpass medical expectations.

To reserve your free lesson call:

Michelle M. Turner 602.909.2565

Reserve a space for your child to receive a free introductory Anat Baniel Method lesson. Find out what a difference this new work can make in a special needs child’s life.


You can find out more about the Anat Baniel Method here. I will say that from what I've seen of this method, this is a great opportunity.

Right of the Month- May

To be informed about the types of records and information which are kept on your child and family, and the steps you can take to review and request changes to those records.

The agency I work for, and most other agencies that I know of, keep a file for each child/family in service. Our files include things like current IFSP's, evaluations, therapy reports, things signed at intake, and logs from each visit. Since the files are about your child, as the parent you have the right to ask to see the file. We prefer to make an appointment so that someone can sit down and go through the file with you, but there isn't anything in the file that you wouldn't be allowed to see. I believe the procedures with the DDD might be a bit different and a bit more formalized, but I searched briefly on their site and didn't find any info. If you are requesting a copy of your child's DDD file for some reason, calling your support coordinator would be a good first step.

Wednesday, May 13, 2009

Down Syndrome conference at Phoenix Children's

Phoenix Children's Hospital Presents:
Down syndrome: Recent Advances in Medical Treatment

Saturday, May 30, 8:00am-12:00pm
Panel of physicians specializing in Down syndrome including our own Medical Director, Dr Jason Turner
Down syndrome: Recent Advances in Medical Treatment

Audience – families and caretakers of children with Down syndrome
Saturday, May 30th
Cost – Free
Location –Cohen Conference Room
Agenda
7:30 – 8:00 Registration
8:00 – 8:05 Welcome & introductions Lynda Christel
8:05 – 8:25 A parent's perspective Dr. Jason Turner
8:25 - 8:45 Primary Care Teens Dr Tressia Shaw
8:45 - 9:15 Developmental Pediatrics Dr Elaine Ellis
9:15 – 9:45 GI, Feeding Dr. Dana Ursea
9:45 – 10:15 Endocrinology Dr. Don Wilson
10:15 – 10:30 Panel Q & A PCH
10:30 – 10:45 Break
10:45 – 11:15 Orthopedics, Special Olympics Dr. Lee Segal
11:15 – 11:45 Cardiac Dr. Jeff Pearl
11:45 – 12:15 Pediatric Radiology Dr.Towbin
12:15 Panel Q & A PCH

Free parking
Refreshments
Register online at http://ga1.org/ phoenixchildrens /events/down_ syndrome_ event/details. tcl
Contact Karen Pennington, Physician Relations at 602-546-3300 kpennington@ phoenixchildrens .com

Saturday, May 9, 2009

ACDL Hearing Update

"Zoe M. v. Blessing: Update - May 20 Stay Put Hearing Set" on Arizona Center for Disability Law
The U.S. District Court has set oral argument for ACDL's Stay Put Motion on Wednesday, May 20 at 11:15 am in Courtroom 6B, 405 West Congress Street in Tucson. ACDL filed a class action lawsuit against the Arizona Department of Economic Security to prevent the state from carrying out millions of dollars in budget cuts which violate federal and state law and greatly reduce or eliminate early intervention programs..."

http://acdlaw. ning.com/ forum/topic/ show?id=2968555% 3ATopic%3A1101

Wednesday, May 6, 2009

Public Hearing on Friday

If you can't attend, please send an e-mail!


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 by4:00 p.m. on June 3, 2009 will be considered. The draft application will be available atwww.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:

5/8/09- Phoenix- 2:30-3:30pm

AZ DOT – HRDC

Grand Canyon Rooms 1&2

1130 N. 22nd Avenue

Phoenix, AZ 85009


5/26/09-Flagstaff 2pm-4pm

East Flagstaff Community Library Meeting Room

3000 N. Fourth Street, Suite 5

Flagstaff, AZ 86004




5/27/09- Phoenix 4pm-6pm

Yucca Library Meeting Room

5648 N. 15th Avenue

Phoenix, AZ 85015


5/28/09- Tucson 4pm-6pm

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.

Saturday, May 2, 2009

Sit tight...

and wait. That's the advice that is being given to families in service right now. The DES is aware of the court's decision, and is considering what it will do. Hopefully we'll hear something within the next week or so.
Until then, (and legally after that also) IFSP's are still in effect, and are still legally binding. That means that services should continue. Keep contacting legislators, DDD officials, and anyone else who doesn't realize these services are essential for helping kiddos reach their potential.
If a provider or support coordinator tells you that your services are being discontinued, first of all ask for it in writing. Second, call AzEIP 602-532-9960 or DDD 602-364-1379 or statewide 866-229-5553 and report it. I would also be interested in knowing if this is happening.
It has also been suggested that parents may want to call and restart the request for a due process hearing. The phone # is 602-532-9960. If you get voice mail, make sure to leave your name and phone # (# two times so they will be sure to get it correct and be able to contact you).
I have a PDF of the court's actual ruling, but I don't think I can post PDF's here, and I don't have an actual link. If you are interested in reading it, let me know and I can e-mail it to you.

Friday, May 1, 2009

Court Injunction Overturned

I don't know what this means, but I agree with everyone else that it sounds like BAD news. I don't know why it was decided in a state court when the laws being broken are federal ones. I'm back in high alert mode, and will be posting any information that I can get confirmed.

By Howard Fischer
Capitol Media Services
Tucson, Arizona | Published: 05.01.2009
Arizona is free to cut services to an estimated 30,000 residents with developmental disabilities, the state Court of Appeals ruled Thursday.
In a unanimous decision, the judges found that nothing in state law bars the Department of Economic Security from reducing services, overturning a trial-court ruling blocking cuts made in response to a legislative order to trim spending. The three-judge panel rejected arguments that those who have been getting help from the state are legally entitled to the services that have been specifically recommended for them. The judges also concluded there was nothing illegal about the state reducing what it pays to organizations that provide services to those with disabilities — funding cuts challengers said would affect those services.
Thursday's ruling comes less than two months after Judge Joseph Heilman of Maricopa County Superior Court blocked the DES from cutting services. Heilman said he had reached the "inescapable conclusion" that the haste with which DES acted in cutting its spending "has served to create nothing less than mass confusion, anxiety and uncertainty" among those who receive benefits from organizations paid to provide services. Heilman also said the DES acted to reduce services even though lawmakers did not relieve the agency of its legal responsibilities to provide care for those with mental-health problems.
Jennifer Nye, an attorney for the Arizona Center for Disability Law, said she was disappointed in the ruling. "We know that thousands of adults and children with disability are going to be harmed by these cuts in services and rates," she said. Nye also called it "very shortsighted on the part of the state to balance its budget on the backs of its most vulnerable population."
Lawmakers made $580 million in spending cuts in late January as part of a plan to deal with a $1.6 billion budget deficit. The DES share of that was close to $100 million. But the agency said its total cuts really amounted to more than $150 million, with cash taken from special accounts and the refusal of lawmakers to provide additional needed funds.
The DES, in turn, cut payments to service providers by 10 percent. It also eliminated services for people who are moderately developmentally disabled who, with support, can work in the private sector. And it dropped funding for early-intervention services for 2,000 children, from birth through age 3, who are at risk for developmental disability.
The appellate judges said lawmakers did nothing wrong in making a lump-sum cut to the DES budget and letting the agency decide what services to trim. They said legislators were faced with "a sobering assessment of plummeting revenues."

Wednesday, April 29, 2009

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.

Tuesday, April 28, 2009

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.

Tuesday, April 21, 2009

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.

Friday, April 17, 2009

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!

Tuesday, April 14, 2009

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.

Saturday, April 11, 2009

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

Friday, April 10, 2009

White Envelope Campaign

I know this is late in coming, but I've had a crazy week.

NO MORE BUDGET CUTS!

CRITICAL SERVICES ARE BEING CUT FOR CHILDREN AND ADULTS WITH DEVELOPMENTAL DISABILITIES AND OTHER SPECIAL HEALTH CARE NEEDS. THE AZ COMMUNITY NEEDS TO TAKE A STRONG STAND –STRENGTH IN NUMBERS – TO LET OUR GOVERNOR AND LEGISLATORS KNOW…

THIS IS NOT OKAY!

On April 10th, 2009, we want to let them know in a BIG way that we are a united front. Here’s what YOU can do:


1) Get a white envelope (letter size works well)

2) On the back of the envelope, write the following message:

(You could also print & paste this message to the back of an envelope.)


This envelope represents one baby, child or adult with

disabilities who’s life will be critically impacted by budget

cuts. This envelope is empty because it represents what the lives

of people who are vulnerable will be like without the support they

need to live with dignity and respect. It also represents the

emptiness that our communities will experience without the

inclusion of people with disabilities. Sad…lonely…empty. Is anyone listening?

3) Send your empty envelope to The Honorable Jan Brewer, Governor of Arizona, 1700 West Washington, Phoenix, AZ 85007. Additionally, do another envelope for each of your District Representatives and your Senator. You can find your legislators online at www.azleg.gov .You can also find your District listed on your voter registration card.
4) Put a stamp on the empty, sealed envelope (with message on back) and

mail on April 10th

5) E-mail this message to every single person you know who cares.

It may seem that those who care about people with special needs are in the minority. It may seem like we have no voice. Let us show our elected officials that the voices of those who care for people with developmental disabilities and other health care needs are not silent and must be heard. An empty envelope will send the message that there is moral outrage over these budget cuts. It will be quiet, but clear.

IT IS IMPORTANT THAT YOU DO THIS. PEOPLE WITHOUT A VOICE ARE COUNTING ONYOU! IT IS A SMALL THING FOR EACH OF US TO DO THAT CAN HAVE A HUGE IMPACT!

“Never doubt that a small, group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” -Margaret Mead