Collaborative Problem Solving with Ross Greene, PhD

At least until such time as there is a medication to effectively manage PWS’s hyperphagia food drive symptom, individuals with PWS will require continuous supervision for the duration of their lives in order to live safely. When it comes time for our loved one to move out of the family home, it can be challenging to find an appropriate residential environment that will meet their unique and complex medical and behavioral needs. PWCF is here to help.

PWCF maintains a list of group homes in California that serve adults diagnosed with PWS, as well as a list of Supported Living Service agencies whose staff can be trained to serve a resident diagnosed with PWS.

To best support individuals with PWS, PWCF will provide staff training free of charge to all residential providers within the State of California that serve someone with PWS; vocational, day program, and volunteer providers may also receive training at no charge. Contact PWCF to learn more.

Home and Community-Based Services (HCBS) Rules and Regulations significantly affect group homes, supported living service providers, day programs, vocational work sites, and any provider that receives Federal funding, most often paid via the Regional Center system. Arguably the most significant directive that impacts persons with PWS is the requirement that “individuals have freedom and support to control their schedules and activities and have access to food any time.”

This Regulation can create unnecessary behavior problems at best, and at worst, result in death from choking, stomach or bowel rupture, or stomach or bowel necrosis. Professional care providers need specific documentation in order to successfully petition for a waiver of HCBS Rules and Regulations that allow them to restrict access to food and ensure the unique health and safety needs of the individual with PWS.

PWCF worked closely with various agencies to identify what documentation would help substantiate a waiver request to restrict access to food. We worked with the Centers for Medicare and Medicaid Services (CMS), California’s Community Care Licensing (CCL), California’s Department of Developmental Services (DDS), and various PWS specialists throughout the country. From these collaborations we created a number of helpful tools, each of which is described and available below.

All HCBS Documents with Cover Letter
Agreement for Individual with PWS – Elopement
Agreement for Individual with PWS – Food
HCBS Final Rule Fact Sheet
HCBS Informational PowerPoint Presentation
HCBS Questions with CMS Answers Article
PCP-IPP Cheat Sheet
Physicians Note: Symptom and Treatment Checklist v. 6

The first key to creating a food-safe environment is to have all of the individual’s PWS symptoms and health and safety needs documented in their Individual Program Plan (IPP). HCBS Rules and Regulations place tremendous emphasis on meeting the wants, wishes and dreams of the disabled individual as they are expressed at the IPP meeting; a process called Person-Centered Planning (PCP). The individual’s wants, wishes and dreams are to be written into the IPP document, and the IPP Team’s job is to design a program that safely meets those expressed wants, wishes and dreams as closely as possible. Without detailed written documentation in the individual’s Person-Centered Planned Individual Program Plan (PCP-IPP), providers will have no legal choice but to allow your loved one to have unfettered access to food whenever they request it. The PC-IPP is a legal document; whatever is written in the IPP must be implemented and whatever is not written in the IPP can not be implemented.