For Parents

you are not alone.

This parent section is divided into age groups so start with whichever link above fits your child’s age.

There is a great deal of information available to parents and care providers of persons diagnosed with Prader-Willi syndrome.  Families and professionals are encouraged to learn as much as you can about medical and therapeutic treatments and how to manage the symptoms associated with PWS.

As you gather information from this and other PWS sources, you are encouraged to connect with other parents, care providers, and professionals who have walked where you’re now walking and can share their wisdom and insights.

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 adult with PWS.

We know that parenting an infant can feel overwhelming, especially if you have just received any kind of medical diagnosis. PWCF is here to help and support you every step of the way on your journey. We can help you understand what you need to know about Prader-Willi syndrome, how it may impact your child, and connect you with information and resources to help you manage its symptoms so that your baby grows into the extraordinary individual he or she was born to be. Take a look around this site and if you don’t find what you’re looking for, send us an email or give us a call and we will work to get you what you need. There are a host of additional resources available, including the Member Handbook & Records Keeper binder that new members receive as a gift of membership. Remember, you are not alone on this journey.

Below is a Quick Guide to learning more about areas of particular interest for parenting an infant through age 3 years.

Request a Parent Mentor to provide you with one-to-one support [email PWCF Office with pre-written verbiage: “Please contact me about a Parent Mentor” ]

PWCF Parent Sharing and Information Exchange Group for Birth to Three Years
Online and in-person groups are available. Click here to register for the next share group.

PWSA | USA eSupport Group for Ages Birth to Three Years provided through Facebook

Clinics and Physician Referrals List
Early Intervention Therapies
Feeding Issues & Nutritional Phases in PWS
Growth Hormone Therapy
Growth Hormone and PWS Booklet 2nd Edition
How to Obtain Services
How to Share the Diagnosis with Family and Friends
Orthopedic Issues
Regional Center Early Start Program
Regional Center Services Beyond Age 3 Years
Supplements
Undescended Testes in Boys
When Your Baby is in the NICU

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.

Behavior Management

Dental Problems in Children and Adults 

CalABLE

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.

Residential Services

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

Of Prader-Willi Syndrome’s myriad symptoms, sometimes even surpassing the life threatening and life-limiting hyperphagia food drive, maladaptive behaviors typically rank as one the greatest challenges. While PWS is a spectrum disorder and not everyone will exhibit the same degree of behavioral symptoms, the strategies presented within the resources below will help you better manage PWS’s behavioral symptoms. For more information about PWS or to request a PWS Training for your school, clinic staff, residential or vocational work staff, just contact us!

Behavior Tool Kit
Blind Rage 
Contract Form
Empathy is a Powerful Intervention
Empathy Protocol 
Lying and Confabulating
Managing a Meltdown IPWSO 
Never Spank the Child with PWS 
Overview of Food & Behavior Management 
Personality Greyscale 
PWS Environmental Basics
PWS Mindset Coping Skills
Table of Neuro Symptoms and Interventions 
Talking to Your Hyper-Reactive Child 
Theft
Picking and PWS
Primer for PWS 
Psychiatric ALERT 

While no one likes to think about our own mortality, it is unavoidable. It is highly advisable for parent of a child diagnosed with Prader-Willi syndrome to prepare ahead in order to ensure that your child is always well cared for.

A Will is a legal document that spells out how you want your affairs handled and assets distributed after you die. A Will does not avoid Probate Court which can be a timely and costly legal procedure.

A Living Trust is a bit more complicated but can provide greater benefits, especially depending upon your assets. A Living Trust offers greater control over when and how your assets are distributed and avoids probate court which often more than justifies the additional complexity of setting it up.

A Special Needs Trust, also called a Supplemental Needs Trust or a Third Party Funded Special Needs Trust, is the legal document that allows for a disabled person to maintain his or her eligibility for public assistance benefits such as Medi-Cal and Social Security benefits despite having assets that would otherwise make them ineligible for those benefits. Assets of $2,000 or more makes someone ineligible for public benefits. It is critical to work with an attorney who specializes in writing Special Needs Trusts to ensure your Trust is written properly and will protect your loved one’s ability to benefit from your assets after you are gone.

The State Bar of California maintains a Lawyer Referral Service, and PWCF maintains a list of attorneys who specialize in writing Special Needs Trusts, Living Trusts, and Wills. PWS mom and attorney Lisa Thornton shares a brochure to help families understand the importance of creating these critical protections.

Parents have the legal responsibility and right to make decisions for their minor children. Once a child becomes age 18 he or she is considered an adult in the eyes of the law, and decision-making responsibility transfers from the parent to the adult child, regardless of disability status.

Most persons with PWS are not able to make informed and appropriate decisions regarding their health and safety including medical care, self-care, living arrangements, and finances. Therefore PWCF strongly encourages you to pursue conservatorship so that you or someone you designate has the legal authority to help your loved with decisions that are in his or her best interest.

Conservatorship procedures differ from county to county within California. If you do not work with a conservatorship attorney, ask your Regional Center Case Coordinator to help you or check with your local Probate Court for your county’s conservatorship resources and forms.

To learn more, review the important resources below:

Bet Tzedek Self-Help Conservatorship Clinic
Conservatorship FAQs
Conservatorship Booklet for Lanterman Regional Center Families
California Courts Self-Help for Conservatorship
Facts About PWS That Conservatorship Attorneys Need to Know
Handbook for Conservators