Sunday, March 29, 2009
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
Sunday, March 22, 2009
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.
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.
Friday, March 20, 2009
If you have run across any other links or news stories related to the most recent rally, please let me know!
Tuesday, March 17, 2009
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 20th.
· 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.
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
Monday, March 16, 2009
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.
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.
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
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.
March 9, 2009
State-only 0% Members Move to State-only 100%.
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
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.
APIPA-CRS Member Services
CRS Payment Agreement Form
Advocacy and contact info will be in the next entry.
Sunday, March 15, 2009
Don’t Cut Us Out!
March & Rally
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 email@example.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!
Friday, March 13, 2009
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."
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.
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)
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."
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.
Thursday, March 12, 2009
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.
Wednesday, March 11, 2009
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.
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."
"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.""
Tuesday, March 10, 2009
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.