Your child has already made much progress and will continue to progress during the school years with the proper supports. It’s important to note that some skills may take your child longer to achieve or may remain challenging, but with appropriate supports at home and at school along with your love and support, your child can thrive.
You will want to maintain your child’s eligibility for Regional Center services under the Lanterman Act to help you obtain supports or services not provided by your child’s school district, and to support your child’s and your family’s needs long after the school age years. Please contact PWCF if you need more information than what is included under Regional Center Eligibility and Services, if your child was denied eligibility, or if you are about to appeal a denial of eligibility or a service.
Children typically begin to exhibit PWS’s hyperphagia food drive, “insatiable appetite”, symptom during the school age years. As soon as this occurs it will be important to implement Food Security measures in your household and in all areas of your child’s environment to help manage this symptom, reduce your child’s anxiety and frustration, and improve his or her overall well-being. The resources under Food Security will help you accomplish this.
Because of changes in neurology, when the hyperphagia symptom appears generally so too do behavioral symptoms typical of PWS. This means that you may need to incorporate some parenting strategies that are specifically designed to meet the needs of your child with PWS. There are a host of PWS-specific strategies and resources under Behavior Management to help you and your family members reduce and manage behavioral symptoms. In addition, PWCF provides frequent conference and training programs, and is always available for consultation.
PWS is a rare medical disorder which means that few, if any, of your child’s school staff will know anything about PWS and its potential impact on your child in the school setting. The resources under Educational Information are intended to help you understand the educational system and help you inform your child’s teachers at the start of each year about the specific supports and services that will help your child in his or her educational setting. School trainings are also a service provided by PWCF.
PWCF is here to support and empower you as you parent your child during the school-age years. Below is a Quick Guide to learning more about areas of particular interest for parenting the school-age child.
Dental Problems in Children and Adults
CalABLE is a savings and investment plan offered by the state of California to individuals with disabilities. Eligible individuals, family, friends, and employers can contribute up to $15,000 a year and as much as $100,000 total without affecting the account beneficiary’s public disability benefits, such as SSI and Medi-Cal. Earnings on qualified withdrawals from a CalABLE account are federal and California state tax-free. Visit the CalABLE website to learn more.
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.
HCBS Rules & Regulations Impact the Health & Safety of Adults with PWS
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.
Please contact PWCF when you have questions or need assistance with the residential needs of your loved one with PWS.
THE IPP IS KEY
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.
Now more than ever before, the Person-Centered IPP must be written with extreme attention to detail and foresight.
PERSON-CENTERED IPP CHEAT SHEET