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Group Warns of Escalating Health and Safety Crisis in I/DD Community
Releases Video to Increase Awareness
Calls to End One-Size-Fits-All Policy Solutions

Harrisburg, Pennsylvania – Together for Choice, a national advocacy organization formed to protect and advance the rights of individuals with intellectual and developmental disabilities (I/DD), today announced the ACT NOW for Severe Autism Campaign with a consortium of partners, including the Rehabilitation and Community Providers Association (RCPA), concerned parents and other advocates. The campaign seeks to shine light on the growing health and safety crisis involving individuals with severe autism and change policies that deprive them of the services they need.

“For too long, individuals with severe autism have remained in the shadows and all too-often forgotten in policy discussions,” said Ashley Kim Weiss, National Coordinator of Together for Choice. “Most of the attention and resources have been devoted to integrating high functioning members of the I/DD community into society, which we agree is important. Equally important, however, are the most vulnerable individuals with severe disabilities who can never fully integrate and are in desperate need of customized care and support to live healthy and productive lives.

The group promoted a video, which first debuted at the RCPA Conference held in Pennsylvania last week. A parent of a severely autistic child self-financed and produced the video to combat the increasing claims of the highly vocal and publicly visible advocates of the neuro diversity community, that severe autism does not exist. Or worse yet, that the needs of those individuals with severe autism are no different than the needs of any other individual diagnosed with autism.

The video can be found at: https://youtu.be/xwvKYE5C2Ys

“While the video is at times uncomfortable to watch, it is critical that the public see the realities that these individuals and families face on a daily basis,” said Richard S. Edley, President and CEO of RCPA. “We need more resources and more flexible policy solutions to address this growing crisis. One-size-fits-all solutions must end. We must recognize that one-size does not fit everyone. People will always be left out – and sadly, it is often the most vulnerable who are forgotten.”

The group also launched a website at www.ACTNOWFORSEVEREAUTISM.com which houses the video and contains a petition to end these policies as well as more information about how the public can get involved and advocate for change in policies that discriminate against individuals with severe autism and their families.

About Together for Choice
Together for Choice (TFC) is a non-profit organization with a mission to unite to protect and advance the rights of individuals with intellectual and developmental disabilities (I/DD) to live, work and thrive in a community or setting of their choice. Please visit www.togetherforchoice.org for more information.

About the Rehabilitation and Community Providers Association:
With well over 350 members, the majority of who serve over 1 million Pennsylvanians annually, Rehabilitation and Community Providers Association (RCPA) is among the largest and most diverse state health and human services trade associations in the nation. RCPA advocates for those in need, works to advance effective state and federal public policies, serves as a forum for the exchange of information and experience, and provides professional support to members. RCPA provider members offer mental health, drug and alcohol, intellectual and developmental disabilities, children’s, brain injury, medical rehabilitation, and physical disabilities and aging services, through all settings and levels of care. Visit www.paproviders.org for more information.

 

Contact for TFC
Ashley Kim Weiss
National Coordinator
Together for Choice
P: 310-889-8800

Contact for RCPA
Richard S. Edley, PhD
President and CEO
Rehabilitation and Community Providers Association (RCPA)
P: 717-364-3280

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On Friday, October 1, the Department of Drug and Alcohol Programs (DDAP) resubmitted to the Independent Regulatory Review Commission (IRRC) its Final-Omitted Regulations on Standards for Drug and Alcohol Recovery House Licensure, as well as its response to IRRC’s disapproval order of Aug. 24, 2021.

The regulations are publicly available on IRRC’s website.

The submitted regulatory package includes the updated regulations (p. 98–129), as well as:

  • a regulatory analysis (p. 1–12);
  • IRRC’s disapproval order (p. 86–92);
  • DDAP’s response to IRRC’s disapproval order (p. 93–97);
  • a preamble that includes public comments and DDAP’s response to comments (p. 48–85);
  • a sample recovery house licensing application (p. 13–14);
  • a sample recovery house licensing checklist (p. 15–22); and
  • additional DDAP forms (p. 23–35), as well as a description of forms that must be provided by the recovery house (p. 36–46).

The above linked documents reflect the changes made to the regulations since DDAP appeared at IRRC’s public meeting in July. The revised regulations are scheduled to be considered at IRRC’s next public meeting on Thursday, October 21.

Upcoming Timeline:

  • DDAP expects that the new regulations will be in effect by October 2021.
  • DDAP expects to require compliance with the new regulations by April 2022.

Which Recovery Houses Will Need a License?

Once the new licensing program is in place, drug and alcohol recovery houses must have a license to:

  1. Receive referrals from state agencies or state-funded facilities; or
  2. Receive federal or state funding to deliver recovery house services.

In addition, the law imposes two additional requirements on referrals to recovery houses:

  1. People whose treatment is funded with state or federal funds shall only to be referred to licensed recovery houses.
  2. Courts shall give first consideration to licensed recovery houses when residential recommendations are made for individuals under their supervision.

Additional information on drug and alcohol recovery house licensing can be found here.

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We invite and encourage all Human Service Providers in Pennsylvania to participate in the RCPA workforce survey. The statewide survey examines workforce topics for a diverse range of programs, including Mental Health, IDD/Autism, Brain Injury, Drug & Alcohol, Inpatient Rehabilitation Facilities (IRF), and others. The survey responses seek to gather data related to hiring, retention, vacancy rates, pay structures, vaccinations, and COVID-19 impacts on programs as well as access to care associated with the pandemic. The workforce survey will close on Wednesday, October 13, 2021.

The survey was developed for Legislative and State Stakeholders that requested RCPA to quantify the impact of the pandemic on our workforce so that we might effectively lobby for the welfare of the agencies that support and serve individuals with disabilities and health issues. RCPA has made the survey available to providers across Pennsylvania, not just RCPA members. Please be assured that response data will be de-identified and aggregated for reporting by an independent research entity, and your individual data will be shared with no one.

We thank you in advance for your time in completing this survey and would ask that you share this information with your colleagues, fellow leaders, and Human Resources teams. The more information collected, the more we will be able to provide to stakeholders, which will affect not only RCPA members, but all providers within the Commonwealth.

Please review the Master List of survey questions, which includes all service line areas, questions on the program operations, and vaccinations, to assist in your survey responses. A copy of the results of this survey will be available to all participants at the conclusion of the study. Please complete the survey here.

If you have any questions, please contact RCPA Director of Children’s Services Jim Sharp.

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The Office of Long-Term Living (OLTL) has issued a notice announcing the extension of various regulatory provisions under the state disaster emergency declaration that are currently in effect and which were set to expire on September 30, 2021. These are now extended until further notice. A list of the regulations that were suspended in whole or in part and their current status is available here.

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Rep. Seth Grove, chair of the House State Government Committee, has reintroduced legislation that would eliminate Pennsylvania’s HealthChoices behavioral health carve-out and instead integrate physical and behavioral health care into one managed care program. On Thursday, his bill (HB 1940) was referred to the House Health Committee.

In 2018, RCPA wrote a position paper in support of continuing the behavioral health carve-out. In 2019, RCPA signed onto a letter from the Coalition to Preserve Behavioral HealthChoices opposing what was then HB 335.

Read Rep. Grove’s co-sponsorship memo.

Read HB 1940.

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