Department of Economic Security Autism Work Group
The purpose of the DES Autism Work Group is to bring together representatives from state agencies, provider organizations, advocacy groups and family leaders to develop and propose service recommendations for people with autism. These recommendations shall be based on best practices in the field, be economically feasible or have strategies for funding feasibility, be family and person centered and include a draft plan for statewide implementation.
Advisory Committee member, Diedra Freedman, will be representing the Arizona Autism Coalition on the DES Autism Work Group. She will be positing updates and information as it becomes available.
Friday, Sept. 12th was the initial meeting of the DES Autism Work Group. I attended as the AZ Autism Coalition representative. While I was half an hour late (my primary job remains as Andy’s chauffeur), I did my best to represent the Coalition. The initial meeting was a meet & greet session to familiarize everyone with each other & begin exploring currently available AZ social services for people with ASD and their families. The posted information was provided. Please note that the written comments on pages 3 & 9 of the DDD Executive Overview are mine. The note on page 12 came with the materials.
It was decided that the next meeting would be a 5 hour facilitated session so that Barbara Brent could participate and the work group could get down to business fleshing out the current state of affairs regarding ASD services in AZ & putting together a vision for where we hope to go from here. I personally was impressed with the spirit of cooperation and collaboration that defined the group attitude. I’m optimistic that we will be productive & promise to do my best to make that reality. On that note, I promised that the AZ Autism Coalition was ready, willing & able to serve as a resource to the DES Autism Work Group especially regarding research. As requests are made by the DES Autism Work Group, I will contact the advisory board and/or Coalition members with expertise in the requested areas for assistance. I appreciate your help. Also, if anyone has any concerns, questions or comments regarding the work of the DES Autism Work Group, please let me know so that I can do my best to represent the Coalition.
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I work with young adults on the spectrum as well as belong to the adult asperger support group. Issues with DES and VR are constant topics of discussion in our groups. I would be interested in contributing to this work group from the aspie perspective. I have had the opportunity to meet with the director of DES, which was arranged by David Carey of ABIL, and know how hard they are trying to meet these needs. I participated in the training that all VR counselors received on working with ASD adults last year. I have met with Senator Miranda, along with a strong parent adovcate, her son, and David Carey to plead for continued funding of the DES programs needed to provide the support that ASD adults need. Our adult group has started a petitition to that effect that is based on research done in England showing the impact on taxpayers when these needs are ignored. If I can help you in representing the AZ Autism Coalition at these meetings, please let me know. I am anxious to do so. Thanks. Sue
Sue:
Thanks so much for your assistance. When the issue of support for adults with ASD is on the DES autism work group meeting agenda I definitely will contact you beforehand for your assistance. Please continue to check this blog for updates including meeting agendas if they are provided in time to post before the work group meetings.
De
I was just forwarded a great new website put together by a parent that specifically addresses how to navigate Arizona’s disabilities system, and where to find all the services. I have read through is and find it very informative. Please take a look.
Hi. I coordinate an early intervention program up here in Flagstaff and met a few of you at the meeting you held here at NAU. I am looking for the the ALTECS questions/scoring. I have a family who has a child with autism who has just been denied and I want them to try again. Does anyone have a link to the info?
Here is the info based upon my experience as the parent of a child with autism who qualified for ALTCS at 24 months old that I share with other parents:
Obviously the best way is to be as prepared as possible before the ALTCS interview so that the child qualifies as soon as possible. Read the PAS instrument and go over it line by line using http://www.ahcccs.state.az.us/Publications/Eligibility/chapter1000/appendix_10b.pdf, the ALTCS examiner manual instructing them how to complete the PAS qualification instrument, to find the necessary 40 points per child before you meet with the ALTCS examiner. Remember, however, you don’t get to fill out the PAS instrument. The ALTCS examiner fills out the PAS based upon his/her observations and your answers to his/her questions. You need to gently influence the PAS examiner without blatantly telling them how to complete the PAS. Keep in mind that people who get told “how to do their job” don’t usually appreciate it!
If your child is denied ALTCS, you need to keep in mind that winning an administrative appeal is almost impossible (you need to show that the state is being arbitrary and capricious), but ask for a review anyway. What do you have to lose? You always can withdraw your appeal and refile a new ALTCS application at any time including on the spot during any meetings regarding your appeal. This may give you a bargaining chip with ALTCS. Since your main concern is future ALTCS qualification so that your child can get needed DDD services, you can always withdraw your appeal at any time as long as forfeiting your child’s right to back ALTCS coverage from the date of the original application isn’t an issue for you. If your child has accrued substantial unpaid medical bills since the date of your original application, this bargaining strategy may not be to your best advantage. See http://www.azdisabilitylaw.org/pdfs/H-5%20RevisedJan06.pdf for the Arizona Center for Disability Law Self Advocacy Guide. If you have any legal questions regarding your rights, please check out the ACDL website at http://www.azdisabilitylaw.org.
Upon receiving notice of denial, the first thing you need to do is send a letter to ALTCS informing them that you are appealing and requesting that ALTCS send you a copy of the child’s scored PAS. The procedure is in the book of rights they gave you and should be in your denial letter. Make sure to follow the appeal procedure to the letter. The best way to appeal an ALTCS denial is to challenge the actual PAS scoring item by item. A developmental delay diagnosis doesn’t in and of itself qualify a child for ALTCS. The key phrasing is that the child is “in danger of being institutionalized.” Also, you can orally request that ALTCS fax you a copy of the child’s scored PAS. (see http://www.ahcccs.state.az.us/publications/Eligibility/chapter1600.asp#1602.05, C. Who Needs Authorization). Don’t let ALTCS tell you they can’t fax it or that they’ll bring it when they meet with you. Demand a copy before meeting with anyone from ALTCS regarding your appeal so that you can review the scored PAS & find the necessary points to get the child qualified for ALTCS. When you receive the copy of the scored PAS, go over it line by line using http://www.ahcccs.state.az.us/Publications/Eligibility/chapter1000/appendix_10b.pdf, the ALTCS examiner manual instructing them how to complete the PAS qualification instrument and find the necessary 40 points per child. There are several parents who would be happy to speak with any parent or caregiver applying for ALTCS for a child with special needs & share their experiences. If I can be of any assistance, contact me or any other parent and we’ll be happy to share our experiences. Please share this information with anyone who may find it beneficial.
Diedra Freedman
2433 N. 125th Dr.
Avondale, AZ 85323
623.341.7085
d-f_freedman@cox.net
I’m sure we all hope the AZ Legislature & soon to be Governor Brewer are listening. Autism is the only disease and/or disorder to get a specific mention in President Obama’s 24 point agenda. This was posted yesterday at 12:01 est. on http://www.whitehouse.gov/agenda/disabilities/
Autism
President Obama and Vice President Biden are committed to supporting Americans with Autism Spectrum Disorders (“ASD”), their families, and their communities. There are a few key elements to their support, which are as follows:
* First, President Obama and Vice President Biden support increased funding for autism research, treatment, screenings, public awareness, and support services. There must be research of the treatments for, and the causes of, ASD.
* Second, President Obama and Vice President Biden support improving life-long services for people with ASD for treatments, interventions and services for both children and adults with ASD.
* Third, President Obama and Vice President Biden support funding the Combating Autism Act and working with Congress, parents and ASD experts to determine how to further improve federal and state programs for ASD.
* Fourth, President Obama and Vice President Biden support universal screening of all infants and re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Screening is essential so that disabilities can be identified early enough for those children and families to get the supports and services they need.
We all need to check http://www.whitehouse.gov regularly for updates!
Thank you for providing the sample letter. I am trying to reach other families, affected by other
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