Free Conference for Parents

Raising Special Kids
FREE

Conference for parents:

Learn collaborative strategies for therapy

Raising Special Kids is sponsoring workshops taught by professionals to aid families in helping their children learn and maintain skills.

Professionals from the fields of Occupational Therapy, Speech Therapy, Behavior Analysis and more will offer workshops to teach parents techniques they can use at home to help their child's progress.

Saturday, May 2, 2009
8:30 a.m. - 3:00 p.m.
Phoenix Children's Hospital
Cohen Rosenberg Building, Mel Cohen Conference Room
1919 E. Thomas Road, Phoenix, AZ 85016 · Parking available in adjacent parking garage

Space is limited, please register by contacting Raising Special Kids at 602-242-4366 or info@raisingspecialkids.org
(please put "Conference" in the subject line) with your name, phone and email.

Spanish translation available.

Public Notice for Comments

These are important issues, and these meetings are a good time for parents and families to comment on services and what is and isn't meeting their needs. The text below is a bit wordy, so I've tried to bold the important parts (meeting times/locations and contact info).

According to one parent, there are several proposals on the table that parents need to be aware of:
1. Families will be informed that their IFSP records will be kept for five years after their child leaves AzEIP.
2. AzEIP will institute a Family Cost Participation (FCP), this would require that families whose children receive services from AzEIP and DDD (but not ASDB) families making over 200% of the federal poverty level will pay 15% of the costs of their child's services (therapies, not service coordination, evalutions/assessme nts or IFSP development) and then it will increase by 5% to 100% of the costs.

The Department of Economic Security, Arizona Early Intervention Program (DES/AzEIP), is seeking public comment between April 3, 2009 and June 3, 2009 on the attached proposed FFY 2009 Application for
Federal Funds under Part C of the Individuals with Disabilities Act, including proposed changes to Family Cost Participation, General Supervision, and Procedural Safeguards policies.

PUBLIC NOTICE:
APPLICATION FOR FUNDS UNDER PART C OF THE INDIVIDUALS WITH DISABILITIES EDUCATION ACT
FEDERAL FISCAL YEAR 2009 (July 1, 2009-June 30, 2010)
The Department of Economic Security (DES), as the Lead Agency for Part C of the Individuals with Disabilities Education Act (IDEA), is seeking public comment on Arizona's draft 2009 Application for Federal Funds. The Arizona Department of Economic Security, Arizona Early Intervention Program (DES/AzEIP) will accept input on the application beginning April 3, 2009 until June 3, 2009. The application is for Arizona's early intervention program, a statewide program for infants and toddlers, birth to three years of age, with disabilities and their families. The participating State agencies include: the Arizona Department of Economic Security (DES), Arizona State Schools for the Deaf and the Blind (ASDB), Arizona Department of Health Services (DHS), Arizona Health Care Cost Containment System (AHCCCS), and the Arizona Department of Education (ADE). Persons submitting comments on specific items in the application should indicate support, opposition, suggested changes, additions, or deletions pertaining to the specific item. Input received by DES/AzEIP by 4:00 p.m. on June 3, 2009 will be considered. The draft application will be available at www.azdes.gov/AzEIP. If you are unable to access the application electronically, please contact DES/AzEIP at (602) 532-9960; toll-free at (888) 439-5609, or by email at AllAzeip2@azdes. gov.

The Department of Economic Security, Arizona Early Intervention Program (DES/AzEIP) will conduct public comment hearings on the draft 2009 Application for Federal Funds, at the following locations and dates:

Phoenix May 8, 2009
2:30-3:30 p.m. AZ DOT - HRDC
Grand Canyon Rooms 1&2
1130 N. 22nd Avenue
Phoenix, AZ 85009

Flagstaff
May 26, 2009
2:00-4:00 p.m. East Flagstaff Community Library Meeting Room
3000 N. Fourth Street, Suite 5
Flagstaff, AZ 86004

Phoenix
May 27, 2009
4:00-6:00 p.m. Yucca Library Meeting Room
5648 N. 15th Avenue
Phoenix, AZ 85015

Tucson
May 28, 2009
4:00-6:00 p.m. Himmel Park Branch Library Meeting Room
1035 N. Treat Avenue
Tucson, AZ 85716

Oral and written comments will be accepted at the public hearing.
Written comments may also be mailed to DES/AzEIP, 3839 N. 3rd Street,
Suite 304, Phoenix, AZ 85012; or emailed to allazeip2@azdes. gov.

Thank you in advance for your careful consideration and comments.

Arizona Early Intervention Program
3839 N. Third Street, Suite 304
Phoenix, AZ 85012
602-532-9960, toll free 888-439-5609
fax 602-200-9820
WWW.AZDES.GOV/ AzEIP

White Envelope Campaign

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

NO MORE BUDGET CUTS!

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

THIS IS NOT OKAY!

On April 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!

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!

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

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.