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 

The adult years can bring a whole new set of challenges for families. Thankfully PWCF is here to help. We recommend you stay connected with us, read our online and printed communications, and attend our Annual State Conference, webinars and trainings held throughout the year so that you stay informed and empowered.

If your child is or is approaching 18 and you have not already secured Conservatorship we strongly recommend that you begin working on that right away. Upon reaching the age of 18 your adult child should be eligible for SSI and Medi-Cal (California’s version of Medicaid) even if they were not eligible as a minor, as well as apply for Social Security benefits.

Social Security Benefits

Supplemental Security Income (SSI) is a Federal income supplement program funded by general tax revenues (not Social Security taxes). It is designed to help aged, blind, and disabled people who have little or no income, and it provides cash to meet basic needs for food, clothing, and shelter for more information and visit the SSA website for more information about SSI benefits in general.

Children with a diagnosis of PWS under age 18 can get Social Security Income (SSI) benefits if they meet the Social Security’s definition of disability for children and there are limited income and resources in the household. More information about eligibility is available at the Social Security website. Visit the SSA website for more information about SSI benefits for children under age 18. Share the booklet or share the link with your child’s physician to help them understand how to complete their required section on the SSI application.

Adults with a diagnosis of PWS age 18 and older can get SSI if they meet Social Security’s definition which includes not earning more than a specific amount of income per month (the amount changes each year) and not being able to work without the support of supervision or a job coach. PWCF advocates that by definition, adults with PWS meet these criteria. Visit the SSA website for more information and to apply for SSI benefits. Applying for SSI benefits can be tricky. PWCF will do our best to help you through the process.

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.

HCBS Rules & Regulations Impact the Health & Safety of Adults with PWS

There are new Home and Community-Based Services (HCBS) Rules and Regulations that significantly affect group homes, supported living 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 provision is that “individuals have freedom and support to control their schedules and activities and have access to food any time.”   

This provision is life-threatening to persons with PWS. We now know that even just one overeating episode can lead to death from choking, stomach or bowel rupture, or stomach or bowel necrosis. Therefore, persons with PWS cannot have free access to food and in fact need an environment where food is securely restricted with locks at all times. Without proper and very specific documentation, however, providers will be required to provide your loved with with food at their request even if it endangers their health and safety.

PWCF’s HCBS Task Force has been working closely 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 to develop tools that will help families and providers provide a safe environment for adults with PWS in their out-of-home placement, work or day program and recreational settings, and all other community settings.

The key to creating this safe environment is to have all of the individual’s PWS symptoms and health and safety needs documented in their Individual Program Plan (IPP). The new 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; this is 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 meets those expressed wants, wishes and dreams as closely as PC-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.

To help families and providers obtain this critical documentation, PWCF’s HCBS Task Force has developed a host of new tools, all of which are listed below and in the Yellow Box to the right.

PERSON-CENTERED IPP CHEAT SHEET

Now more than ever before, creating a detailed and appropriate Individual Program Plan is critically important. Every service and aspect of care your loved one receives from any entity that is funded in any way by the Regional Center system and/or Medicare and/or Medi-Cal must comply with the new HCBS Rules and Regulations. Every aspect and detail of the delivery of that service must be clearly written in the PCP/IPP. If it’s not included or described in the IPP, service providers can’t/won’t do it. PWCF has created a new template PCP/IPP Cheat Sheet to help you know what to include in your loved one’s PCP/IPP. We have also created new tools that you can add to your PCP/IPP, including a Physician’s Note and Individual Agreements for locking food and securing door and window exits.

PHYSICIANS NOTE SYMPTOM AND TREATMENT CHECKLIST

The Physician’s Note is a new and critically important tool developed to meet some of the new documentation requirements. The Physician’s Note is to be completed by you and one of your loved one’s physicians. At your next Regional Center IPP meeting, discuss the Physician’s Note and have it entered in the PCP/IPP. The signed Physician’s Note should be shared with every service provider including the residential provider, day program provider, vocational work site provider, recreational program provider, and volunteer site administrator to help them better understand each symptom your loved one experiences and the necessary treatment or management strategies. The Physician’s Note is available in written form and a PDF format for easy emailing.

INDIVIDUAL AGREEMENT REGARDING FOOD AND LOCKS

Another new tool developed to help you meet health and safety documentation requirements is the Individual Agreement Regarding Food and Locks. This new tool is an “agreement” with the individual with PWS that he or she may not have access to unauthorized food, even and especially when expressing emotional upset, and is to be incorporated into the PCP/IPP and distributed to all professional providers. This Agreement document is recommended because new Federal and State regulations lean heavily toward meeting the expressed wants and wishes of the disabled individual who, in the case of PWS will likely at some point request food outside their snack and meal schedule. This Agreement is not a legally binding contract but does serve as additional documentation to help professional providers not give food to your loved one if your loved one requests or demands it.

INDIVIDUAL AGREEMENT REGARDING ELOPEMENT AND LOCKS

If your loved one has a history of eloping or running away, this new Agreement can help ensure their health and safety. Like the Agreement Regarding Food, this new tool serves as documentation that your loved one authorizes the doors and windows are locked to prevent them from eloping. The Agreement Regarding Elopement and Locks should be incorporated into the PCP/IPP and distributed to all professional providers.

CONSERVATORSHIP

In the eyes of the law a person who is 18 years or older is deemed an adult capable of handling their own affairs and making all of their own decisions. There is no legal protection of an adult who has PWS or any developmental disability unless there is some legal arrangement in place. In California, this legal arrangement is called a Conservatorship.

Once your loved one with PWS turns 18 you as their parent or care provider have no legal rights if you don’t have Conservatorship. If your loved one runs away or chooses to live somewhere dangerous, you have no legal right to keep him or her safe. If your loved one is hospitalized you have no legal right to direct medical care or even receive information from the doctors. If your loved one enters into a contract or charges money on a credit card, they are legally obligated to pay the debt or incur legal consequences. If your loved one steals food or other items from a store, you have no legal input to their defense. Conservatorship gives you the legal authority to help your loved one make important life decisions and ensure their health and safety.

Read CONSERVATORSHIP FAQS to learn more about Conservatorship and how to obtain it. Provide all attorneys and other professionals a copy of FACTS ABOUT PWS CONSERVATORSHIP ATTORNEYS NEED TO KNOW. Your Regional Center Case Coordinator can help you start the process.

Will and Special Needs Trust

A Will allows you to direct the distribution of your property and leave assets to your children, grandchildren, other heirs, or charities. If you die without a Will, the State of California will determine how to distribute your estate and assets, not you.

If your loved one with PWS has or inherits any assets, including life insurance or retirement benefits, that total more than $2,000 he or she will be ineligible for Social Security benefits and Medi-Cal. Assets your loved one with PWS received from Medi-Cal are subject to immediate repayment for care they previously received. Medicare may be the only health care benefit your loved one receives which does not offer the same benefits as Medi-Cal. Assets left to others to care for your loved one could be lost to creditors, litigation, divorce, etc.

A Special Needs Trust allows your family to avoid probate and the accompanying delay, court costs and attorney fees, allows you to leave money for your loved one’s care without disqualifying them from government benefits, and will allow extra money every month to make his or her life more wonderful. Without a Will and a Special Needs Trust there is no guaranteed security or protection.

Both your Will and Special Needs Trust should be written with an attorney who specializes in these documents. If the Special Needs Trust is not written correctly, it can’t protect your loved one. While PWCF does not endorse or recommend any organization or attorney, the following organizations may be helpful:

The new HCBS Rules and Regulations give adults with PWS and others with disabilities enormous rights to control their lives. Without written documentation in the format accepted by CMS, DDS and the Regional Center these rights actually prohibit parents, care providers, and even conservators from overruling them, even when they are dangerous to your loved one. Therefore PWCF encourages parents, care providers and conservators to:

  • Immediately complete the Physician’s Note and provide it to your loved one’s “main” physician to review and sign; 
  • Talk with your loved one about the Agreement Regarding Food and Locks and, if appropriate, the Agreement Regarding Elopement and Locks, and ask them to sign the Agreement(s);
  • At your next IPP meeting with your Regional Center Service Coordinator, add the Physician’s Note and appropriate Agreement(s) as part of your Person-Centered IPP;
  • Secure Conservatorship if you haven’t already done so; 
  • Create your Will and Special Needs Trust if you haven’t already done so.

Now more than ever, parents, conservators, and care providers must play an active role at all Person-Centered Planning IPP meetings. Review all of your Regional Center reports as soon as you receive them and immediately make any necessary corrections or clarifications.

Please know that PWCF is here to assist and support you, your loved one and your family. Contact the PWCF Office with any questions or to speak with any member of PWCF’s HCBS Task Force: Lisa Graziano, M.A., Chair, Diane Kavrell, Tom McRae, Austin de Lone, Jonah Steinhart

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