Due Process Letters

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

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)

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

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

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

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

"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.