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Advocacy

In the words of Judy Heumann, “Disability only becomes a tragedy when society fails to provide the things we need to lead our lives.”

At the Autism Society of Greater Phoenix, our mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully. This includes advocacy! We pride ourselves in doing what we can to improve the systems of care in Arizona for the disability community as a whole. Cynthia Macluskie is the head of our Advocacy Committee. 

Paid Provider Support Program

In 2020, the Division of Developmental Disabilities announced that parents can be paid as Temporary Direct Care Workers for their own children. The purpose of this option was to give parents and guardians another way to ensure that their child could continue to receive Habilitation or Attendant Care services without having outside providers come into the home during the COVID pandemic. As parents are not able to work another job while providing these services for their child, DDD allows parents and guardians to be paid for providing these services as a TDCW. This program is also important, as there is a high demand, yet lack of Direct Care Workers.  AHCCCS has announced that this option will be available until at least 2024. You can read our letter of support to continue this program here and here

Raising Voices Coalition is leading the way to continue this program. Learn more about Raising Voices Coalition here.

Crisis Report

The Arizona Center for Disability Law (ACDL), along with Arizona Developmental Disabilities Planning Council, Autism Society of Greater Phoenix, and numerous advocacy organizations, hosted a press conference on January 25, 2022 to highlight a report on how Arizona’s crisis response system is failing for people with intellectual and developmental disabilities (I/DD). The report finds that there are many crisis situations where individuals with I/DD and their families are left to call police when behavioral health services are out of reach. Yet, their loved ones never receive follow up services, remaining in danger well after these calls are made. “We’ve known about these issues for years, but the system still has not improved. It’s actually gotten worse. This is a vulnerable population in need of help, and the system continues to fail them,” stated Melissa Van Hook, Chairperson of the Arizona Developmental Disabilities Planning Council. The report is based on a series of meetings with family members and state officials, as well as a review of policies related to the crisis response system. Stronger accountability of behavioral health providers, stricter communication protocols between crisis providers and health plans, and more training for the entire crisis system on the unique needs of people with I/DD are a few of the recommendations listed. The recommendations are intended for state legislators, agencies, health plans, law enforcement and organizations to strengthen their own policies to better support people with I/DD in crisis. “Crisis services today do not understand the needs of our population. It is our hope that collaborating on these recommendations will lead to better access to care and better care overall,” said Cynthia Macluskie, President of the Autism Society of Greater Phoenix. You can read the Crisis Report here

Read the Mental Health Day at the Capitol 2024 Brochure here

Autism Spectrum Disorder (ASD) Advisory Committee

In April 2015, a statewide ASD Advisory Committee was established by the Governor’s Office, representing a broad range of stakeholders to address and provide recommendations to strengthen services for the treatment of Autism Spectrum Disorder (ASD). Cynthia Macluskie, our Board President, was one of the 30 members appointed by the Governor to serve on this committee.  You can read the ASD Advisory Committee Report here and the Addendum here.

Independent Oversight Committees

In August 2018, legislative changes took effect which renamed the previously known Human Rights Committees (HRCs) to Independent Oversight Committees (IOCs). The legislative changes established  within the Arizona Department of Administration (ADOA) the Independent Oversight Committees (IOCs) of: Department of Economic Security (DES), Department of Child Safety (DCS), Arizona Health Care Cost Containment System (AHCCCS), and Department of Health Services (DHS)/Arizona State Hospital (ASH).

Each IOC is comprised of between seven and fifteen members; membership requirements are as follows:

  • IOC on Persons with Developmental Disabilities (DES/DDD): Statute requires members to have expertise in at least one of the following areas: psychology, law, medicine, education, special education, social work, criminal justice; and shall include the at least two parents of children who receive services from the Division of Developmental Disabilities. [A.R.S. § 41-3801]
  • IOC on Children, Youth and Families (DCS): Statute requires members will have expertise in at least one of the following areas: psychology, law, medicine, education, special education, social work; and shall include at least two parents of children who receive services from DCS; if a report of abuse has been substantiated against a parent, that parent shall not serve on an IOC. [A.R.S. § 41-3802]
  • IOC on the Mentally Ill (AHCCCS): Statute requires members will have expertise in at least one of the following areas: psychology, law, medicine, education, special education, social work, mental health, housing for the mentally ill, criminal justice, public safety; at least two parents of children who receive behavioral health services pursuant to tile 36, chapter 34, and at least one member who is a current or former client of the behavioral health system. [A.R.S. § 41-3803]
  • IOC on Behavioral Health Services for Persons with Serious Mental Illness  (DHS/ASH): Rule requires that at least two (2) members of the committee shall be clients or former clients, at least two members shall be relatives of clients, two members shall be parents of enrolled children and at least three members shall have expertise in one of the following areas: psychology, law, medicine, education, special education, social work, or behavioral health services. [A.A.C. R9-21-105]

You can apply to be on an IOC. Complete the application here. 

Advocacy Flyers

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