Early Intervention in Arizona

Family Cost Participation and Redesign...again

2010-08-19T21:23:00.000-07:00

Now nobody panic because I haven't heard anything definite, but the mumblings are now that FCP is slated to kick in on 11-1-10, and DDD redesign (aka the team based approach) may be starting in early 2011. Here is the letter that I think went out to families or may be going out soon.
The family letter:
DEPARTMENT OF ECONOMIC SECURITY
DIVISON OF DEVELOPMENTAL DISABILITIES (DDD) AND
ARIZONA EARLY INTERVENTION PROGRAM (AzEIP) PARTNER TO EXPAND
THE EARLY INTERVENTION TEAM-BASED MODEL ACROSS ARIZONA
This notice is to inform you about an upcoming change in how the Division of Developmental
Disabilities (DDD) provides early intervention services to children birth to three with developmental
delays and developmental disabilities. The changes emphasize working together as a team, increasing
access to services and making birth to three services more coordinated for families.
DDD, under the umbrella of the Arizona Early Intervention Program (AzEIP), provides early
intervention services to eligible children, birth to three, and their families. In the early intervention
program, families and professionals work together to support and enhance children’s growth,
development, and learning in their natural environment. In addition to the increased coordination and
access to services, this change will also enhance the Department of Economic Security’s ability to
provide timely services as required by Part C of the Individuals with Disabilities Education Act (IDEA.)

For the past few years, the Department of Economic Security’s early intervention programs, DES/AzEIP
and DDD, have been working to ensure that Arizona’s children and families receive needed services and
supports in ways that are most beneficial to them. At community forums held statewide, families,
providers and other interested stakeholders shared their thoughts about the early intervention program.
A plan for “redesign” was drafted and families and professionals were invited to review and comment.
Based on their input, AzEIP implemented a new “team-based service” model in 2008 for those families
served by contractors of DES/AzEIP (not eligible for DDD).

In early 2011, DDD will begin implementing early intervention services with this team-based
model. The goal is to improve the way in which families and children receive supports and
significantly expand access to early intervention services.

Early intervention services provided by a team means that each team will have the capacity to provide
occupational, physical and speech therapies, developmental special instruction, social work and
psychology services. A family and their “team” will decide which provider will be the family’s “team
lead” to coordinate with other team members. By having each professional working as part of the same
team, the family will have the benefit of their combined expertise. Support coordination services will
continue to be provided by DDD.

When the new service model is implemented it may mean some changes in who provides services.
There will be opportunities to ask questions and learn about the changes through both a comment period
on the Qualified Vendor application and informational sessions to provide more specifics on how the
team based model will operate and guidance on transition to the new model.
DDD looks forward to continuing its commitment to working with you, your family, and your child.

Family Cost Participation- Delayed!

2010-02-26T21:55:00.000-08:00

DIVISION OF DEVELOPMENTAL DISABILITIES DELAYS IMPLEMENTATION OF FAMILY COST PARTICIPATION

FOR EARLY INTERVENTION SERVICES

The Department of Economic Security (DES), Division of Developmental Disabilities (DDD) is delaying the implementation of its new Family Cost Participation program for recipients of early intervention services. Families were to begin sharing in the cost of their early intervention services effective March 1, 2010. The program is being delayed a minimum of 60 days. As a result, families who have been determined responsible to share in the cost of their services will not be charged for their current array of services until May 1, 2010 at the earliest. To clarify, that means they will not participate in the cost of their family's services for the months of March and April but may be expected to share in the cost of services that are provided beginning May 1st. Families will be notified of the new program standards prior to implementation. Families whose children are Arizona Long Term Care System (ALTCS) eligible will continue to be excluded from the Division's Family Cost Participation program. The Department is using this time period to further evaluate program parameters, including income standards, and operating procedures. Thank you for your patience and understanding. If you have questions, please contact 602-364-1379 or e-mail your question and phone number to DDDHotline@azdes. gov.

2010-02-12T14:23:00.000-08:00

The Budget is the top issue down at the Capitol, and Family Cost Participation fees are the talk of the AzEIP system.

First the Budget:

To recap, last year AzEIP received an additional $9 million from the federal government through the stimulus program, in addition, providers received a 10% rate cut and the state began preparing to collect fees from families with a Family Cost Participation plan. Families with children enrolled in the DDD-state only part of AzEIP will begin to receive bills in April for services received in March. Families with children enrolled in the AzEIP-only portion of AzEIP will receive letters in the coming weeks informing them that they will receive bills for their Early Intervention services. The Governor proposed her Budget and the Joint Legislative Budget Commission prepared a menu of options for the budget. Now is the time when people take a closer look and begin to talk about what may be cut, what new revenues will be raised and what programs will remain intact. There are a number of options on the table, they include additional rate cuts to providers--we already have a provider shortage in Arizona; Another option is to increase the number of families in the Family Cost Participation program by expanding it to include those enrolled in ALTCS (birth to three and above); and, Another option on the table is to stop providing early intervention services.

It is important that families speak up now! Please, call, write and/or email your legislators and the Governor (to find your legislator go here: http://www.azleg. gov/ for the Governor go here: http://www.azgovern or.gov/). Enclose a picture of your child and tell them what the AzEIP system has meant for your child and family. Ask your family and neighbors to do the same. Remind the Governor and the Legislature that AzEIP has seen a 19% increase from 2005 to 2009 in the children served each year. Tell them that providing services and supports to infants and toddlers early and as soon as possible means significant long-term savings as children are more ready to learn when they leave AzEIP. Tell them that AzEIP has data that proves that children benefit from these services and supports! Tell them your story and most important tell them that they must continue to provide early intervention services to infants and toddlers with disabilities without any further cuts or fees. Tell them that infants and toddlers cannot make up for lost time--two or five years from now when the state is in better shape financially will be too late, and will mean higher costs for the state down the road. If you are concerned about your ability to pay the Family Cost Participation fee, by all means include this in your letter, tell them how much your family will be responsible for and how that will impact your family. Ask your providers if they are sharing this kind of information with other families--tell them to have families join the listserve: ArizonaEarlyInterve ntionParents_ Caregivers@ yahoogroups. com to stay informed.

Second the Family Cost Participation:

If you do not believe you can afford the monthly bills--DO NOT WITHDRAW from AzEIP--please contact your Support Coordinator, you can appeal the decision and provide additional information explaining why you believe you cannot afford the fee, you can also hold an IFSP Team meeting to discuss how you might change your IFSP but still achieve your outcomes for your child. If you do decide to make changes to your IFSP in an effort to reduce your Family Cost Participation fee keep in mind that you should be meeting with your IFSP team (Service/Support Coordinators, all therapists, and anyone else you feel would be helpful as you work this through)--you can meet in person or have some members teleconferenced; as a last resort you can keep your service coordination- only services. Please remember that certain services are NOT subject to the fee: Support Coordination services, IFSP Team Meetings (this includes the time for ALL members of your team to participate) , Assessments/ Evaluations. If you have concerns or questions please call your Support Coordinator, if they cannot assist you or you still have questions call their Supervisor, call the DDD hotline (602) 364-1379 or the AzEIP office (602) 532-9960. Remember you can also call the Parent Training and Information Centers (Raising Special Kids or Pilot Parents) or disability-specific Advocacy programs (like Sharing Down Syndrome, EVAN, and the Autism Coalition).

-Letter I received from the ArizonaEarlyInterventionParents_Caregivers mailing list.

Family Cost Participation

2010-01-21T07:38:00.000-08:00

From the DES website here:
"Effective March 1, 2010 the Division will implement a family cost participation program for early intervention services. The Department of Economic Security Arizona Early Intervention Program (AzEIP) is authorized by Federal law (20 U.S.C. §1432(4) (B); 34 C.F.R. §§303.520 and -.521) and Arizona law (ARS 36-562(G)) to require parents/responsible parties to pay for a percentage of their child’s services. Children who are Arizona Long-Term Care System (ALTCS) eligible are excluded from this program. The amount a family may have to pay will be based on adjusted gross income over 200% of the Federal poverty level, family size and the costs paid by the State for the services their child receives.

If you have questions, please contact (602) 364-1379 or email your question and phone number to DDDHotline@azdes.gov. "

Hopefully this isn't new news to anyone- most of the families that I know of have already received their letters. I keep hearing that support coordinators should be getting in touch with families in order to determine what their payment would be each month and adjust the IFSP accordingly if families will be unable to pay for services. I did see that families could apply for a hardship waiver of fees but I don't know how that works or what the chances of getting a waiver would be.

E-mail, write, and call your legislators.

Possible News Story

2009-12-19T17:56:00.000-08:00

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.

Please, please e-mail or call your legislators!

2009-11-20T09:29:00.000-08:00

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

Update from Raising Special Kids

2009-11-03T14:05:00.000-08:00

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/

AZ budget info....again

2009-10-27T19:38:00.000-07:00

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

Good info :)

2009-07-26T23:52:00.000-07:00

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).

Autistic meltdown vs. temper tantrum

2009-07-14T20:33:00.001-07:00

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.

Steven's Law

2009-06-29T14:54:00.001-07:00

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.

You're Not Listening rally June 23rd

2009-06-22T18:23:00.000-07:00

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.

AHCCCS Eligibility Policy Manual

2009-06-13T15:12:00.000-07:00

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.

Right of the Month- June

2009-06-10T08:23:00.000-07:00

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.

Supreme court to hear budget cut challenge

2009-06-03T12:09:00.000-07:00

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.

Free Anat Baniel clinic

2009-05-23T09:33:00.000-07:00

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

2009-05-23T09:24:00.000-07:00

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.

Down Syndrome conference at Phoenix Children's

2009-05-13T20:05:00.000-07:00

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

ACDL Hearing Update

2009-05-09T15:04:00.000-07:00

"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

Public Hearing on Friday

2009-05-06T20:08:00.000-07:00

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. 22^nd 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. 15^th 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.

Sit tight...

2009-05-02T14:51:00.001-07:00

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.

Court Injunction Overturned

2009-05-01T12:07:00.000-07:00

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."

Right of the Month- April

2009-04-29T17:57:00.000-07:00

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.

2009-04-28T19:08:00.000-07:00

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!!

2009-04-21T10:58:00.000-07:00

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

2009-04-21T10:00:00.000-07:00

*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

2009-04-17T10:08:00.000-07:00

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

2009-04-14T20:40:00.000-07:00

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

2009-04-11T08:35:00.000-07:00

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

White Envelope Campaign

2009-04-10T08:28:00.000-07:00

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 10^th, 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 10^th

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

Celebrate Autism Awareness Month!

2009-04-07T14:31:00.001-07:00

COME TO CASINO ARIZONA FOR A MUSICAL TRIBUTE TO AMERICA'S GREATEST SUPERSTARS AND HELP CHILDREN WITH AUTISM IN ARIZONA!

DATE: Thursday, April 30th

TIME: Cocktails at 5:15 p.m. & Show from 6:45-8:20 p.m.

LOCATION: Casino Arizona at 101 & McKellips
524 North 92nd Street, Scottsdale, AZ 85256

MORE: Download the FLYER or visit our WEBSITE for more information!

Sensory Friendly Films!

2009-04-07T09:59:00.000-07:00

ASA & AMC Present Sensory Friendly Films!

Hannah Montana:
The Movie

DATE: Saturday, April 18th

TIME: 10:00 AM

LOCATION: Two Valley Locations

MORE: Visit our website for
locations and more information!

The Story of Sally

2009-04-04T21:40:00.000-07:00

In my Getting Started post I tried to outline the process for beginning early intervention services for a young child. Since it can be confusing at best, I thought I'd try and make up a story to show how the referral process can work. So, this will be the story of Sally. Again, Sally is fictional. She is not one of the kids that I work with, although her story will hopefully reflect the process as it typically works.
Sally is a 2 year-old girl. She 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.
Sally's parents discuss their concerns with their pediatrician. Up until now, the pediatrician has taken a "wait and see" approach, but now he suggests that Sally might benefit from some extra help. Sally's pediatrician recommends that her parents refer her to the DDD, and gives them a referral form. Sally's parents fill out and submit the referral form.
The next week, Sally's parents receive a phone call from a support coordinator. The support coordinator says that in order to determine if Sally will be eligible for services, she must have an independent evaluation. Sally's parents are referred to Phoenix Children's Hospital, and an evaluation is scheduled.
During the evaluation, Sally's parents are asked about her development up until that point. At what ages did she crawl, walk, eat on her own, etc? Has she been ill or hospitalized since birth? What are their specific concerns? The evaluator also observes Sally, and attempts to engage her in some fun activities. After more questions and observations, the evaluator says that Sally appears to have some communication issues, and may be at risk for autism. She also says that Sally would probably qualify for services based on this. She tells Sally's parents (who are somewhat overwhelmed at this point), that she will write up a formal evaluation and send it to the support coordinator.
Sally's parents are still in shock as they drive home. "Autism? Aren't those the kids who sit in the corner and rock back and forth? What does this mean?" At home, Sally's parents get online and search for information about autism, but much of it is discouraging.

To be continued...

Getting Started...

2009-04-01T22:09:00.000-07:00

In the time that I've spent working in the 0-3 system, I've realized that it can be very confusing for parents. As an early interventionist, I'm often the first therapist that the parents see on a regular basis, and I generally spend a fair amount of time outlining the different parts of the DDD process. Here is a basic outline of the DDD process, when it works the way it is supposed to. Although the process isn't always linear, for the sake of clarity I'm going to try and describe it that way.
Initial Referral: Anyone can make an initial referral for a child younger than 6. Some people who might make an initial referral are a parent, babysitter, or a pediatrician. A young child does not need a diagnosis. The DDD page for a referral is here.
Initial Planning Process (IPP): Once a referral has been made, this activates an IPP (Initial Planning Process) team. This is the information gathering portion of the process. It generally includes a developmental evaluation, family assessment, and a discussion of concerns.
Initial Evaluation: The initial evaluation is part of the initial planning process. It is typically done by a developmental pediatrician, a developmental psychologist, or an early interventionist who is specifically trained in evaluation. The results of the evaluation will determine whether or not the child qualifies for services. In general a child who is more than 50% delayed in more than 2 areas of development will get services through the DDD. A child who is delayed in only 1 area of development will receive services through AZEIP. A child who has low vision will receive services through FBC (Foundation for the Blind), generally in addition to other services.
IFSP: If a child qualifies for services, the next step is an IFSP meeting. IFSP stands for Individualized Family Service Plan. The family writes this plan, in conjunction with a Service Coordinator. The IFSP outlines the current strengths and needs of the family and child, the goals that the family has for their child, and the type and frequency of services that will be most beneficial to the family and child. Often during an IFSP, there is a lot of information thrown around very quickly. What is most important is that the goals and wishes of the family are reflected in the IFSP.
Therapies: This is often the part that families have been waiting for from the beginning. After the IFSP has been written to reflect the services that the family wants, the Support Coordinator begins trying to find therapists for that family. The most common therapies are speech therapy, physical therapy, occupational therapy, and early intervention (DSI). This is the part where people often get confused, because it seems like new people are in and out all of the time- therapists, support coordinators, evaluators, etc.
Evaluation: Yes, again. Each type of therapy (other than early intervention), requires a separate evaluation to determine if the child qualifies, and how that child could benefit from therapy. The therapists completing an evaluation might not be the same ones who eventually provide ongoing therapy. Once the evaluation has determined that a child qualifies for ongoing therapy, then that service can begin.
Ongoing Therapy: Once an evaluation has determined that the child qualifies for therapy, then ongoing therapy can begin. For kids ages 0-3, the preference is for therapy to be in the child's natural environment- home, day care, grandma's, etc. In some cases, therapy will take place in a center, and the parents will be expected to transfer the skills learned there to the natural environment.
IFSP Updates: These should happen every 6 months, starting from the date of the initial IFSP. The support coordinator meets with the family, the therapists, and anyone else involved with the child (doctor, nurses, grandma, etc). They discuss the progress made in the past 6 months, and write new goals for the next 6 months. The IFSP team will re-examine the existing supports and services and determine if any changes need to be made.

This therapy/IFSP update cycle continues until the child no longer needs services, or until he or she turns 3 years old. At this point, the child may transition into a developmental preschool, but that transition could (and probably will) be a whole separate post.
Since this is probably still a bit confusing, my next post will be an attempt to show what this process could look like with an actual family.

Celebrate Autism Awareness Month with the ASA Picnic!

2009-03-29T18:15:00.000-07:00

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

2009-03-22T09:59:00.000-07:00

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

2009-03-22T09:32:00.000-07:00

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

2009-03-20T20:55:00.000-07:00

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

2009-03-17T18:03:00.000-07:00

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

2009-03-17T09:50:00.001-07:00

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

2009-03-16T22:17:00.001-07:00

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.

Due Process Letters

2009-03-16T21:45:00.000-07:00

We are hearing that as of a few days ago, only 100 or so due process letters had been filed, out of over 2,000 families who would be affected by DES funding cuts. We NEED more families to write letters. This is the key phrase to use:
I am requesting a due process hearing due to violations of IDEA-related procedural safeguards.
This phrase will trigger pendancy (stay put--continuing services), it will trigger a hearing about the service reductions to your individual child and it will trigger a system complaint regarding this happening not only to your child but to other children in the system.

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

Cuts to CRS Funding

2009-03-16T20:42:00.000-07:00

From an action alert by Raising Special Kids

Due to recent budget cuts at the Department of Health Services, 1,200 children with serious health conditions will be removed from coverage in Children's Rehabilitative Services or CRS. The elimination affects children who are not eligible for Medicaid or ALTCS. Families will become responsible for 100% of the costs of care, even though most have no other health insurance.

CRS provides health coverage to "chronically ill or physically disabled children" under twenty-one years of age, with a primary diagnosis of a severe physical condition that may require ongoing, medical or surgical intervention.
Children are eligible for the CRS program based on specific medical diagnoses, such as Cerebral Palsy, Cystic Fibrosis, Sickle Cell Anemia, Metabolic Disorders, Spina Bifida, Cleft Lip/Cleft Palate, and Congenital Heart Anomalies

Without CRS coverage, many of these children will experience life-threatening conditions from not receiving medications that keep them out of the ER and hospital. Children with serious illnesses will not receive needed surgeries which may lead to increasing disability and in some cases, preventable deaths.
State budget cuts will affect the lives, health, and safety of children in many ways and throughout all systems of care.
Governor Brewer has 18 days left to request $185 million in federal stimulus funds available for Arizona. We can correct this situation by using stimulus funding to restore coverage for CRS:

Please ask Gov. Brewer to request Arizona's stimulus funds before it is too late.

Mailing address: EMAIL: http://azgovernor. gov/Contact. asp

The Honorable Jan Brewer
Governor of Arizona
1700 West Washington
Phoenix, Arizona 85007

Telephone (602) 542-4331 Toll Free 1-(800) 253-0883

These cuts continue to cut deeper and deeper into groups that can ill afford it. Please, please call, e-mail, or write to let Gov. Brewer know that these cuts are hurting families and children.
If this change will present financial hardships for your family you should contact your service coordinator/ support coordinator and ask them to reconvene your IFSP team to assist you in identifying another service provider who will not present such a financial hardship.

If you benefit from CRS (Child Rehabilitative Services)

2009-03-16T20:40:00.000-07:00

you may have received, or may soon receive the following letter:

March 9, 2009

State Budget Cut Impacts CRS Program.
State-only 0% Members Move to State-only 100%.

Dear APIPA-CRS Member:
The state of Arizona is faced with very difficult budget challenges. To help balance Arizona's Fiscal year 2009 budget, the Arizona Department of Health Services carefully examined how to eliminate more than $30 million from its budget. Because of these budget cuts, it was necessary to end state funding for medical services for Children's Rehabilitative Services (CRS) members who are not enrolled in the Arizona Health Care Cost Containment System (AHCCCS).
AHCCCS members who are enrolled in CRS do not pay for CRS services. Children who are CRS eligible, but who are not on AHCCCS, may participate in CRS as "State Only" members. These members were divided into two groups, according to their family income levels. One group could access the CRS network of providers, but paid for CRS services themselves, or through other insurance coverage. These members were referred to as 100% pay members. The other group was eligible for services at no cost, and was referred to as 0% pay members.
Beginning March 20, 2009 the following changes will occur:
• Existing CRS members that do not have coverage under AHCCCS will become 100% pay members, which means they will have to pay for all costs for CRS services after any other insurance coverage.
• AHCCCS members are not affected by this change, unless their enrollment in AHCCCS ends. At any point that a CRS member is not covered by AHCCCS, they will be considered to be 100% pay members, and will have to pay for all costs for CRS services while not enrolled in AHCCCS.
• A Continuity of Care Plan will continue from March 20, 2009 through June 30, 2009. During this time, for members who have been moved from the State Only 0% payment group into the State only 100% payment group, APIPA-CRS will pay for CRS services that are approved before March 20,2009 and provided before June 30, 2009. APIPA-CRS will also pay for maintenance drugs related to CRS conditions through June 30, 2009.
You can get an application for AHCCCS and see the eligibility requirements for AHCCCS at
http://vvww.azahcccs.gov/Members/HowToApply.asp or call to 602-417-4000. For those who are not on AHCCCS, a Payment Agreement Form indicating that you accept 100% payment responsibility isenclosed for your signature. You cannot receive CRS services, except for services that are approved before March 20, 2009 and provided before June 30, 2009 until this form is signed and returned to
APiPA-CRS at
Attn: APIPA-CRS Enrollment,
PO Box 33320,
Phoenix, AZ 85067-3320.
Appeals of this decision are limited to disagreements about temporary coverage described under the continuity of care plan. An appeal must be filed within 60 days from a denied request, and may be filed over the phone, in person or in writing. To appeal over the phone, you can call us at 1-866-275-5776.
If you want to appeal in writing mail to Attn: APIPA-CRS Appeals, 3141 N 3rd Ave, Phoenix, AZ 85013.
Our Member Services Department is available to assist you or answer your questions at 1-866-275-5776.
Sincerely,
APIPA-CRS Member Services
Enclosures:
CRS Payment Agreement Form

Advocacy and contact info will be in the next entry.

Capitol Building Rally

2009-03-15T13:27:00.000-07:00

Tungland Corp. is organizing another rally to raise awareness about the DDD/DES funding cuts. Here is the info from the flier that is going around:

Don’t Cut Us Out!

March & Rally

for

Arizona’s Developmentally Disabled Children, Adults, & Families

Thursday, March 19, 2009

MARCH 11:30 – 12:30p

Where: Route will be on the sidewalks around Wesley Bolin Memorial Park. We will start promptly at 11:30 AM and will circle around Wesley Bolin Memorial Park adjacent to the Capitol.

RALLY 1:00p – 2:30p

Where: The Senate Lawn at the State Capitol

Organizers: The Arizona Developmentally Disabled community and their provider service agencies represented by the Arizona Association of Providers for People with Disabilities.

Sponsors: If you or your organization would like to be a co-sponsor or volunteer for this event, please contact Colleen at 602.617.2129 or colleen@tungland.com.

· Speech by Arizona State Rep. Kyrsten Sinema and other community and political leaders, community members, and advocates.

· Activities during the Rally: Voter Registration, Locate Your Legislator, Participation via Petition, Give the Governor Your Opinion, Send a Message to Your State Legislator

· Music, Singing, Chanting

Why we’re marching and rallying:

· Last January 31, 2009 the Legislature passed a bill that drastically cut funding for 29,000 Arizona developmentally disabled adults, children, and their families. Governor Janice K. Brewer signed the bill.

· The Legislature ordered the Department of Economic Security to implement the cuts without giving the DES any guidance on how to do it. So the DES discharged staff, cut essential services such as Early Intervention Program (EIP) which helps children under three years olds with disabilities, and slashed the rates they pay to service providers by 10%. These devastating cuts threaten to put thousands of Arizonans with developmental disabilities in immediate and irreparable harm.

Contact Governor Jan Brewer, 1700 West Washington, Phoenix AZ 85007

Toll free 1-800-253-0883 FAX 602-542-1381 Phone 602-542-4331

Or online link at azgovernor.gov/Contact.asp

DON’T CUT US OUT!

They are suggesting that participants wear black t-shirts, representing both loss of services, and the elegance and respect that should be accorded to ALL people. I don't know yet if I'll be attending, but if anyone who reads this does, please let me know how it goes! I'd love to see some pictures!

For Detailed Reading

2009-03-13T13:29:00.000-07:00

For those who are interested, the minutes from the ongoing DDD vs. AAPPD case are available here. Most interesting are the court's minute entry containing the facts and findings from the injunction that was issued on Wed. They are available here. It is 21 pages long, but makes for very interesting reading. Here are a few excerpts to whet your curiosity:

"2. The Legislature passed, and the Governor signed SB1001 on January 31, 2009. SB1001 became immediately operative, as it contained an emergency provision. SB1001 attempted to reduce the deficit through a combination of amendments to the prior budget appropriation bills, lump-sum reductions to prior appropriations, transfers of fund monies to the general fund, expenditure reductions and mandatory transfers to the general fund, mandatory personnel expenditure reductions, general fund reductions related to federal matching dollars, and some specific directions to state agencies.
3. The Defendants had little or no time to come up with a plan to implement the DES budget reductions mandated by SB 1001.
4. Defendants conducted an internal crisis decision-making process to determine how they would reduce spending and services within the DES-DDD program of services without guidance or priorities from the Legislature and without an open or public process by which defendants disseminated any information about what was being considered, or that afforded any public input from anyone, including stakeholders in the DES-DDD program, such as beneficiaries, providers and taxpayers."

This is the nuts and bolts of what happened. The Legislature passed a bill ordering the DES to cut approximately $150 million out of their budget, with very little direction as to where exactly the cuts were to be made.
I'm beginning to agree with those who say that making laws is like making sausage- you really don't want to see the process. Unfortunately, since this politicking and process affects people we serve, interested parties NEED to look into it.

"8. As of March 2, 2009, defendants had not notified any beneficiaries or providers about which beneficiaries’ services would be suspended or reduced. This circumstance will likely cause many providers to provide significant amounts of unreimbursed services.
9. Indeed, there is enough circumstantial evidence to create a prima facie case that the defendants are counting on service providers to continue providing a significant amount of unreimbursed services in order to prevent immediate and irreparable harm to multiple program beneficiaries.
10. After hearing, the Court is left with the inescapable conclusion that the haste with which SB 1001 was implemented by DES/DDD has served to create nothing less than mass confusion, anxiety and uncertainty among defendants’ agents, beneficiaries and service providers, as to which beneficiaries will be losing some or all of their services, and for how long. This uncertainty is caused by defendants." (emphasis mine)

This is exactly what happened. As providers, we were finding out from our families who had and had not received termination letters. We did not receive an official list of children whose services were being terminated until the afternoon of 3/6/09- 8 days (including a weekend) before 3/13/09, which was supposed to be the last day for families to receive services. So far as I'm concerned, mass confusion and anxiety describes the situation pretty accurately.

"19. All DES-DDD program beneficiaries have individual service plans (“ISP”). ISPs are essential to plan for the highly individualized, home- and community-based services for each program beneficiary. The ISP is developed by a team that includes the beneficiary, the family and/or legal guardian, therapists and other provider representatives, and DES-DDD itself. The ISP is the document through which services are arranged, provided, evaluated and adjusted when necessary for every DES-DDD beneficiary.
20. In implementing the provisions of SB 1001, defendants have not adhered to the ISP process for any program beneficiaries in accordance with federal or state law and DES-DDD program requirements. Defendants acknowledged that in not one instance (for approximately 29,000 DES-DDD beneficiaries) has DDD evaluated the individual needs of a beneficiary before implementing these spending and service reductions and suspensions."

It took reading further for me to be sure, but I think that when they talk about ISPs, that is a general term that also includes the IFSPs that govern the services for kids ages 0-3. This speaks to the illegality of making blanket changes to services without complying with the proper procedures (including getting consent of the person being served and/or that person's family or legal guardian).
There is much, much more in the minutes than what I'm able to post here. It is definitely worth the time to read in its entirety, even if you have to do it in 5 minute increments between changing diapers and chasing little ones. :)

I leave you with this final thought:
“[i]t is not only the harm to the individuals involved that we must consider in assessing the public interest. Our society as a whole suffers when we neglect the poor, the hungry, the disabled, or when we deprive them of their rights or privileges. Society's interest lies on the side of affording fair procedures to all persons, even though the expenditure of governmental funds is required. It would be tragic, not only from the standpoint of the individuals involved but also from the standpoint of society, were poor, elderly, disabled people to be wrongfully deprived of essential benefits for any period of time.” (emphasis mine)

Regardless of how you personally feel about some of the safety nets that are in place for the poor, these programs keep many people, particularly children, from serious harm. I agree that there are people taking advantage of the system, and that in some cases reform would be beneficial. However, in general, parents and caretakers for people with disabilities are NOT the ones who are abusing the system. The parents I have talked to are overwhelmingly grateful for the services that their children are receiving. What the DES did was to throw the baby out with the bathwater. Nearly every support coodinator or DDD employee that I have talked to has said something equivalent to, "let me at the budget, and I can show you where the money is being wasted." I have no doubt that this is true.

Reinstating Services

2009-03-12T13:30:00.000-07:00

The DDD/DES was court-ordered to send out a letter telling parents/families that all of the suspended services will be reinstated. However, we aren't sure when the letters will arrive, since good news generally travels more slowly than bad news. If you are unsure, or waiting for services to be restored, call your SC (support/service coordinator) and make sure the authorizations have gone through. If they have, ask how long the services are authorized for, and if they haven't, ask why not. I was told today by a SC that none of the current authorizations had been officially canceled yet (the computer was supposed to do it over the weekend). There are, however, some children whose authorizations expired or were not renewed during an IFSP.
In my particular case, I was seeing a child whose services were due to end tomorrow (because of when his IFSP was and because the DDD was not renewing any authorizations). The support coordinator called and said that all services had been re-authorized. We don't know for how long, but it shouldn't take more than a phone call to find out.
Keep in mind that for some SC's, Friday and/or Monday may be a mandatory furlough (non-work) day.
Remember, this injunction is a good thing, but it is only a stoppage of the clock. In order to get the systemic changes that will prevent this from happening again, the legislators NEED to be hearing from families who are being affected. There is contact info in the previous post for everyone I could think of.

Stepping It Up

2009-03-11T13:31:00.000-07:00

"PHOENIX – (March 11, 2009) Today, Maricopa County Superior Court Judge Joseph Hellman issued a preliminary injunction against the Department of Economic Security (DES) preventing the agency from implementing $16.8 million in general fund reductions, including the suspension of non-residential, state-funded services to more than 4,000 children and adults with developmental disabilities and various rate reductions to providers of services to those individuals.
The following is the Department’s statement regarding today’s ruling:
The Department will, of course, abide by the court's ruling, however, we intend to appeal the decision and ask the court to stay the injunction.
The Department’s planned $16.8 million reduction was a result of the lump sum reduction and fund transfers that were part of the special session, as well as unfunded, caseload-driven shortfalls in various programs. The total reduction to DES in the 2009 fiscal year was approximately $153 million.
Information about the budget reductions and impact to children, adults and families is available on the Department’s Web site, www.azdes.gov ." (emphasis mine)

While the injunction is a major victory because it will keep services going for the time being, families and providers are NOT out of the woods yet. As the press release states, the Department intends to ask for a stay so that they can appeal the court's decision.
Because of this, now is not the time to let our guards down. Its the time to keep making noise. Contact those making the decisions. Keep talking about how important these services are, and how discontinuing services hurts kids and families, and violates federal law. Here some specific next steps:

1. Everyone needs to call OSEP 202-245-7549 This is Patty Guard's number, she is the acting director for OSEP (the office of special education programs in the department of education). Tell her you are from Arizona, your child has an IFSP under Part C and your services have been ____________ . Tell her how your procedural safeguards have not been enforced ____________ _________ _____ and that you expect OSEP to assist Arizona in understanding the assurances it made when it took the $9.9 million in federal dollars to administrate this program.

2. Flood the Governor's office with calls, tell her you cannot believe that providing essential supports and services to children and adults with disabilities was not included in the latest round of budget negotions for FY 2009. Here is the contact info for her office.

3. Call your Congressmember and tell them to tell OSEP to stop watching what' s happening in Arizona and get INVOLVED. Tell them to tell Arizona that they cannot violate children's procedural safeguards, that eliminating services to children who have legally binding IFSPs is illegal and OSEP must tell Arizona to enforce your child's IFSP. Here are the contact pages for John Kyl, John McCain, the House of Representatives,

4. Again call your local legislators and tell them they must restore these services ASAP. Here is contact info for the AZ House of Representatives, the AZ Senate, and the AZ State Legislature.

(Remember your child's IFSP is to be individualized and based on your family's priorities, concerns and resources and that all decisions to changes services must be made by the TEAM, which includes you as your child's parents. You are to be provided Prior Written Notice, before any proposed change and you have the right to dispute resolution if you disagree with any proposed change and you have the right to pendancy (your previously agreed upon services continue during the dispute resolution process).
Send your letters to:
DES/AzEIP - disputes
3839 N 3rd St, Suite 304
Phoenix, AZ 85016

DDD Compliance and Review Unit
1789 W Jefferson
Phoenix, AZ 85007

Peri Jude Radecic - AzEIP disputes
Arizona Center for Disability Law
5025 E Washington St, Suite 202
Phoenix, AZ 85034
*Credit for this list goes to Maureen Casey of the EIFA

Feel free to repost any of the information here. I'm blogging about this to get the word out about how important EI is and what we can do to make sure these programs stay around for those who need them.
PS- I am still adding links to my blogroll. If you will be affected by these cuts, or if you have blogged about this issue, leave a comment anywhere and I'll add your link to the list in my sidebar.

Victory!

2009-03-11T13:00:00.000-07:00

Finally, the waiting is over! The judge ruled in favor of the AAPPD, in favor of the families and providers, and in favor of federal law! It was ordered that services to kids ages 0-3 be reinstated as quickly as possible! At the moment, this is the best news that we could have hoped for! Families will continue to receive services until further notice. I don't know if this will save some of the providers who are closing their doors, but it should restore services for all of our kiddos!
I double-checked with my supervisor, and we get to start calling families and "breaking" the good news to them!
Thanks to all who wrote letters, e-mailed, rallied, blogged, prayed, and otherwise stood in the gap on behalf of our families. I don't think we're out of the woods yet, but its definitely looking brighter than it has in quite a while.

Here are some of the news stories about the court's decision.

"PHOENIX (AP) - A judge on Wednesday barred the state from implementing budget cuts for services for the developmentally disabled. Judge Joseph Heilman of Maricopa County Superior Court issued a preliminary injunction after a court hearing on a lawsuit filed by program beneficiaries and care providers."

And

"A judge on Wednesday temporarily barred the state from implementing budget cuts for services for the developmentally disabled.
Judge Joseph Heilman of Maricopa County Superior Court issued a preliminary injunction after a court hearing on a lawsuit filed by program beneficiaries and care providers.
"This case raises serious, indeed grave questions of public policy and law," Heilman's order stated. "The procedural violations have serious substantive impact. Sorting out the multiple legal issues can await disposition on the merits. Preventing immediate and irreparable harm is required.""

DDD Update

2009-03-10T13:33:00.000-07:00

Yesterday the judge made a preliminary ruling on the injunction. He ruled in favor of the AAPPD (Arizona Association of Programs for People with Disabilities), and against the Arizona DDD/DES.
Here is the legalese:
"A declaratory judgment that SB1001, First Special Session, of the 2009 Arizona Legislature is invalid and unenforceable and that said Act may not be enforced or implemented, at the very least with respect to the DES-DDD program reductions.
B. Temporary, preliminary and permanent injunctive relief, restraining these defendants, their officers, agents and employees from implementing SB1001 in any respect with regard to the DES-DDD program.
C. Temporary, preliminary and permanent injunctive relief restraining defendant's, their officers, agents and employees from implementing the DES FY2009 budget reductions directed by these defendants as their method of administering SB1001."

The Attorney General's office has asked for time for "special considerations" and they have been given until Wednesday (tomorrow) to submit them. Keep in mind that this injunction is PRELIMINARY and TEMPORARY. The judge is to decide tomorrow how long it will be, or he could retract the injunction altogether. There is hope for some sort of agreement with the DES, since the judge cannot order legislation to give the DES money.
Overall, we are cautiously optimistic. Its a step in the right direction, but nothing official has changed yet. We're still holding our breath(s), and it looks like whatever decision is made will come down to the wire.

For those in the Tucson area, there is a rally this week at Reid Park in Ramada 7. It will be on Friday the 13th from 10am-12pm. This is to show support for families who have been affected by the cuts to AZ Early Intervention.

For those looking for news stories to pass along, here is one that appeared today and summarizes the issue very well.

And now, we wait

2009-03-07T13:34:00.000-08:00

At least until Monday or Tuesday. That's when the judge should rule on the AAPPD case. A ruling in our favor would prevent 0-3 programs from being cut, at least for the time being. I honestly don't know that it would be a long-term solution- the likely best case scenario that I see at the moment is allowing kids to continue services until their FOCUS dates (authorizations) end, then not renewing. Still illegal though since services can't be reduced without parental consent. I've heard mumblings about pushing the DDD through the same redesign that AzEIP went through last year. In short, each child has a team of therapists, only ONE of which he or she sees on a weekly basis; the rest are consult only. Not a good solution, and still only barely legal, as all of the IFSP's would have to be changed to reflect the change in therapies. I want to make it clear that I'm just speculating here. Right now all I know is that we may have more info on Monday, depending on the outcome of the AAPPD case.
Action steps right now are to write and file those appeal letters. Be sure to emphasize the illegality of what they are doing- an emotional appeal is great, but sadly it won't hold water with the complaint department. And spread the word. Tell everyone you can think of...use any media contacts that you may have. The more attention we draw, and the more people realize the importance of 0-3 services, the better our chances.
Sigh. That being said, we (meaning the company I work for) received a list yesterday of children who will no longer be receiving services after next Friday. There are about 90 names on it...out of around 120 kids that we serve. I haven't seen the list yet, but I'm pretty sure I know most of them since I've had parents contacting me when they received their letters. We're being told to assume that next week will be our last with most of our kids. We will likely try to keep providing services for our kids who are ALTCS eligible, but that will only be enough kids for a few of us to work part time. I'd probably be one of them, and I'm working on some other options to fill in the gaps. I've been doing respite/habilitation on the side for quite a while, so I'm looking to connect with 1-2 other families who could use 5-10 hours/week and are authorized for hab or respite. I have a few families who have asked me if I could work independently and they could pay me out of pocket. I see it as a possibility since I've done similar things before. Unfortunately I well know that most families right now don't have the means to pay out of pocket, and I hate that services will end up being limited either based on an ability to pay, or based on having good insurance. That isn't the intent of IDEA or any of the other laws that govern 0-3 services- the state is supposed to provide the services that the child needs. They're what is known as the payer of last resort, which means that they try to get insurance and everyone else to pay first, but services shouldn't be only for the wealthy. It should be for everyone who needs it. Really, EI saves money in the long run- many kids who go through EI wind up NOT needing more services once they reach school age. Anyways, there I go on that soapbox again.
Really, I'm just trying to relax this weekend and pray that some sort of miracle happens on Monday to at least buy us a bit of time. If it does then we go from there. If not, well I really don't want to think about what that means for so many families.

How to file a complaint

2009-03-06T13:35:00.000-08:00

Use the sample letter below as a format. Letters MUST be in writing and must include the legalities of IDEA Part C

Here is the page that describes the process of filing a complaint/appeal regarding your child's services: https://egov.azdes.gov/cmsinternet/main.aspx?menu=98&id=2366

Below the addresses to which you should send your complaint/appeals letters is the portion of the above-linked page that lays out the steps for filing a complaint with DES/AzEIP:

Send complaint/appeal letters to:
Arizona Center for Disability Law
5025 E Washington St, ste 202
Phoenix, AZ

AzEIP - Dispute
3839 N 3rd St
Suite 304
Phoenix, Az
KTaylor@azdes. gov

DDD - Disputes
1789 W Jefferson St., 4th floor
Phoenix, Az 85007

System Complaint

If you believe there has been any violation of the requirements and regulations of IDEA, Part C, including a violation of your child's or family's rights, you may file a complaint with DES/AzEIP.

Steps in initiating a complaint:

You must send a written, signed complaint to:
Executive Director, DES/AzEIP
3839 N. 3rd Street, Suite 304
Phoenix, Arizona 85012
The written, signed complaint must include a statement that there has been a violation of a requirement or regulation of IDEA, Part C, and the facts of the situation.
The Executive Director or a designee will review the complaint and decide if it is a valid complaint. A complaint will be judged valid if the alleged violation occurred not more than one year before the date the complaint was received, unless:
1. the alleged violation continues for the child or other children; or
2. the person making the complaint is requesting reimbursement or corrective action for a violation that occurred not more than three years before the complaint was received.
If the complaint is judged to be valid, then the Executive Director or a designee will review all the relevant information and will:
1. conduct an on-site investigation, if necessary; and
2. give the person making the complaint the opportunity to submit additional information, either orally or in writing.

The Executive Director or a designee will make an independent decision as to whether there has been a violation of IDEA, Part C and send a written copy of the decision to all parties within 60 days of receiving the complaint.

From here

http://takeactioninaz.blogspot.com/2009/03/send-appeal-letter-to-executive.html

For those appealing the DES/DDD letters

2009-03-06T13:00:00.000-08:00

I realized that the previous version of this was cut off, so I'm fixing and reposting. Please, please write an appeal letter.

From the AZ Autism Coalition www.azautism.org

IDEA Part C Procedural Safeguards

If your child is between the ages of 0-3 and has been affected by these cuts, you have Federal safeguard rights that are meant to protect your child. Early intervention is partially funded by both State and Federal dollars, thus you must take action and appeal your child’s termination of services. Follow the appeals process (Administrative Review) carefully that is specifically detailed in the DES letter — you have 35 days from the date of the letter to appeal.

Here is a sample letter:

To Whom It May Concern:

My child is _____ years old and has a diagnosis of ___________. He/she has been receiving one hour per week of occupational therapy and speech therapy since __________, along with two hours per week with a developmental specialist. I received a letter from DES dated March 3, 2009, informing me that my child would no longer be receiving any therapies after March 13, 2009, due to the State’s economic hardships.

I respectfully request an Administrative Review and appeal this decision to remove services from my child. My child is entitled to early intervention services based on the Individuals with Disabilities Education Act (IDEA). According to Federal IDEA policy, services can only be stopped if the parents choose to withdraw their consent to participate or the child no longer needs services. Neither of which is the case. Also according to IDEA, services must stay in place while dispute resolution takes place.

Removing services from my child in this manner is a direct violation of IDEA, and I fully intend to dispute this removal of early intervention services.

Sincerely,

Send the letters to:

Division of Developmental Disabilities
Compliance and Review Unit
1789 E. Jefferson St., Fourth Floor
Phoenix, AZ 85007
or fax to: (602) 364-2850

Arizona Center for Disability Law
5025 E Washington St, ste 202
Phoenix, AZ

AzEIP - Dispute
3839 N 3rd St
Suite 304
Phoenix, Az
KTaylor@azdes. gov

2009-03-05T13:38:00.000-08:00

I won't say I feel hopeful yet, but this fight isn't over. A majority of my families received their 10 day cancellation letters (including at least one child who shouldn't have received one). There are instructions at the bottom for how to appeal the decision, so we are encouraging parents to write letters of appeal and send them to all interested parties. I posted a sample letter of appeal yesterday, along with instructions for where to send them.
On the legal end, the judge is supposed to rule on the lawsuit Monday. Those present felt that it went well and that we stand a chance. I'm not sure exactly what it would mean for the judge to find in our favor, but it would definitely be a good start.
The magnitude of this situation hits me all over again with every visit that I make. Today I visited a little boy that I've been seeing for almost a year and a half. When we began, he wasn't walking. Now he is walking, climbing, and just about at age level in speech (he has also been receiving speech therapy weekly, and for a short time he also received physical therapy). Its amazing how much good we can do when families can get help EARLY. It is SO much harder to break a bad habit than to just build good habits the first time around. There are countless other kids with a similar story- this is just one.

I'm curious. Has anyone else received a termination letter even though their child qualifies for ALTCS/Long Term Care? I'd be interested to know how many letters were mistakenly sent out.

I suppose I can post this

2009-03-03T13:38:00.000-08:00

It will be public knowledge soon enough. I heard from a DDD support coordinator (and my supervisor heard from another source) that 10-day termination letters to families went in the mail today. My understanding is that means most services for children who do not qualify for long term care will end on March 13. We still have not been told when we'll have to stop providing services. It may become clearer when we actually see the letters that go out, but right now it isn't looking good. Families will still have the option of trying to get their insurance to cover therapies (which can be difficult), or paying privately (not cheap). Truly, though, we are in the 11th hour, waiting for a pardon.
I don't know exactly what I thought would happen with all of the protests and everything, but it doesn't appear to have worked. There were ways to avoid these cuts, and they are opting not to take them. What they're doing isn't even legal- an IFSP is a binding document, the same as an IEP, and it can't be changed (including changing services) without the ok of the entire team, which includes the parents. The state could be facing some more pretty serious legal ramifications for all of this.
Honestly, right now I'm sticking to "just the facts m'aam" because I can't bring myself to go any deeper than that. What I'll do job-wise is secondary right now to the thought of probably more than 3000 families of kids ages 0-3 who will be losing services. All of the kids that I WON'T be seeing anymore. All of the kids that I'm just getting to know, and the ones I've been seeing for more than a year. All of the families who have told me that having therapists there has been the difference between being set adrift in a strange land, and having a road map and someone to guide the way.
In a way, though, this doesn't put me much closer to a resolution. We're still providing services, but with an axe over our heads that could drop any minute. And I hate goodbyes. I generally refuse to say them until the last possible minute, and even then I don't do a good job of them.
I've been sitting here with this staring at me since 8:55pm, and I'm stuck. I still don't know what to say. This is still sort of surreal, and it may stay that way until or unless the axe drops and I actually have to say goodbyes.

They didn't listen after all...

2009-02-27T13:39:00.000-08:00

Well apparently termination of service letters will be going out to families, but no one seems to be able to say when. The letters will supposedly say that they have 10 days of services left. Providers are worried that the DDD won't tell us when the letters go out, so I've been asking my families to let me know if or when they get one.
I've also learned that there was a lawsuit filed on behalf of all of the individuals, providers, and families affected by these cuts. I have it as a non-text PDF, but can't find it online anywhere that I could link to. Its pretty harsh, but its all true.
"...as explained here, the Legislature simply ordered severe cuts in essential services for severely disabled and vulnerable children and adults with developmental disabilities in violation of the Arizona Constitution and both federal and state statutes. This enactment was hurried, ill-considered, effectively shut out the public from the process, and provided the executive branch with no guidance, specifics, or designation of legislative priorities. In its rush, the Legislature mandated massive cuts in essential services with no concept of what would happen to epeople with severed siabilities, their families and care providers; and to the provider community, including whether provider services would remain available and accessible to consumers whose services were not intended to be cut. The way that DES-DDD proposes to implement the cuts will be disastrous to the health and safety of thousands of persons with developmental disabilities, and to the businesses that serve them...."
Where that leaves us, we don't know. Right now I think the plan is still to continue on until termination letters start arriving. When that might be, we have no idea. Overall, I think most of us are still in limbo/shock. Really, what we're being told is changing almost every day. Its hard to believe the DES could actually be cutting all of these services. Most estimates I've seen are that over 3000 families of kids ages 0-3 are going to lose all of their services (various combinations of EI, physical, occupational, and speech therapy). Besides the kids, that means most to all of those therapists and providers will have to take on new caseloads, if they can. I suppose there's still an outside chance that they'll decide to use stimulus money to keep the program funded (how's that for irony?), or that something else will happen.

Should I Bother?

2009-02-26T13:40:00.000-08:00

That's been my question this week, every time I sit down to do something work-related. Do I bother putting together a few intake packets? What about the family I'm trying to start that hasn't been returning my phone calls? We are literally in a place where I could get a call tomorrow that it all goes kablooey as of Monday. Thankfully, that doesn't seem too likely since families haven't been getting termination letters. They ARE being told that authorizations won't be renewed, which means families won't be getting any new services, and many won't have services for much longer (most authorizations come up for renewal every 6 months). What's looking most likely right now, at least from my point of view, is that authorizations just won't be renewed, so kids will slowly drop off of the caseloads (mostly earlier than they should).
These are some pictures from the rally at the capitol building today. I don't know this woman, but I had to get a picture of her sign. I'd guess there were 400-500 people there- not a bad turnout for such short notice. And reasonably impressive when you squeeze them all into a fairly small outdoor area. :) There were also 2 news vans and at least one radio commentator that I saw walking around. I heard we were on both the 12 o'clock, and the evening news today, which is good. The more people see this and the less they are able to sneak it under the radar, the better. I did some searching and found a link to the video, but I'm having trouble embedding it, so here's the link.
I saw lots of families with young kids, and lots of adults receiving services. We tried to get in to talk to some of the senators and representatives, but were generally told that they were all in meetings, so we wound up leaving papers with secretaries and assistants. I saw a few important-looking people walking around appearing miffed that we were interrupting their day. Near the end of the day I ran into a speech therapist I know, and she said she'd been told that at least one senator was refusing to see people or take phone calls.

Here's our whole crew from Mosaic. I'm really happy that people from all of the different departments turned out, including the executive director and the HR lady. Granted, these cuts will affect everyone across the board, although differently. Really, though, the only person we left in the office was the receptionist.

Partway through the afternoon we went into the main area, thinking that the meetings and speeches were going to be here. We were wrong, but it was good for everyone to know we were there. :) One of the senators recognized all of the people from the disability community, so we all hooted and hollered a bit.
Once we realized we were in the wrong place, we hustled into the hearing rooms, where we got to listen in via closed circuit video. The hearings that were scheduled to start at 2pm actually started closer to 2:45. First they grilled someone about the cuts to higher education funding, then it was DES' turn. Some of what was said went over my head, but a fair amount of it made me want to scream. They basically said the cuts were going to hurt children, deny federally-mandated services, decimate the small businesses and nonprofits that provide services, and have more kids needing help when they are school-aged. And yet, they claim they have no other option for making up the budget shortfall.
So really, we did what we could. Letters and e-mails are still being sent, and we showed up and made ourselves heard. Oh, and I have a sunburn.