Adult Years

The adult years can bring a whole new set of challenges for families. Thankfully PWCF is here to help. We recommend continuing to read the PWCF Newsletter and attend our annual conference and other trainings to stay informed of ways to help your adult child. If you have not already secured conservatorship for your child we strongly recommend that you begin working on that right away. Your adult child should also now be eligible for SSI and Medi-Cal (California’s version of Medicaid) even if they were not eligible as a minor. The links above will provide you with more information for those topics.

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

There are new 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. HCBS’s new Person-Centered Planning process directs and guides the writing of the IPP and has extraordinary power that affects the health and safety of your loved one. 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.”   

HCBS’ new Rules and Regulations place enormous emphasis on meeting the wants, wishes and dreams of the disabled individual as they are expressed at the Individual Program Plan (IPP) meeting. The name of the process for gathering this information is called Person- Centered Planning (PCP). The individual’s wants, wishes and dreams are to be incorporated into the IPP document, and the IPP Team’s job is to design a program that meets those expressed wants, wishes and dreams.

The IPP is a legal document; whatever is written in the IPP must be implemented and whatever is not written in the IPP may not be implemented. Now more than ever before, the IPP must be written with extreme attention to detail and foresight.

As you know, 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.

PWCF’s HCBS Task Force has been working closely with the Centers for Medicare and Medicaid Services (CMS), Community Care Licensing (CCL), the Department of Developmental Services (DDS), and various PWS specialists to develop new tools to help families and providers advocate for a safe environment for your adult in their out-of-home placement, work or day program, recreational settings, and all community settings.

The key to this safety is having adequate “proof” or documentation written into the PCP/IPP. Without this documentation, providers may have no legal choice but to allow your loved one to have unfettered access to food whenever they request it. If your loved one receives any service from the Regional Center or any federal funding from any source, those providers are bound by the HCBS Rules and Regulations and may have to allow your loved one access to food upon demand unless the PCP/IPP prohibits it, or they risk losing their Federal funding.

To help families and providers obtain necessary documentation, PWCF’s HCBS Task Force has developed new tools – see the Yellow Box to the right- and reminds families to utilize existing tools.

PCP/IPP Cheat Sheet Template

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.

Physician’s Note Symptom & 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.

Limited 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 Limited 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 Limited 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. Limited Conservatorship gives you the legal authority to help your loved one make important life decisions and ensure their health and safety.

A family member usually serves as the person responsible for ensuring the care of the individual with the disability; this person is called the Conservator. Anyone, however, including a professional agency, can serve as a Conservator.

There are seven powers that a Conservator can hold to assist and support the disabled individual:  1) determine where the individual lives; 2) have access to confidential records and papers; 3) consent to marriage or enter into a registered domestic relationship; 4) participate in a contract; 5) give or withhold medical consent; 6) control over social and sexual contacts and relationships; and 7) make decisions concerning education.

The proposed Conservator will speak to a judge to request the powers they believe are appropriate for your loved one. Your Regional Center Case Coordinator can help you start the process of Limited Conservatorship.

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 have your loved one’s “main” physician complete the Physician’s Note;
  • 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);
  • Schedule an IPP meeting with your Regional Center Service Coordinator that incorporates Person-Centered Planning and have the Physician’s Note and Agreement(s) made a part of the PCP/IPP;
  • Secure a Limited 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.

HCBS Task Force Members:

Lisa Graziano, M.A., Chair | Emily Dame, M.Ed., Executive Director

Diane Kavrell | Tom McRae | Austin & Lesley de Lone | Jonah Steinhart

Former Members: Paula Watney | Christopher Patay, Esq.

Make Connections | Get Support

PWCF has a host of parents to support and help guide you, in-person support groups, and links to online support groups. Click Here for Individual Support and Support Group information. You never need to feel alone.