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

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.

AZ budget info....again

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

Read, call, write, post

Supreme court to hear budget cut challenge

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

From here.

Sit tight...

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

Court Injunction Overturned

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

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

Sally's Story, Part 2

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

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

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

The Story of Sally

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...

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.