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Supported Decision Making - Supports with our courts

When a Neurodiverse individual (an individual deemed as being diagnosed with an Intellectual or Developmental Difference/Disability) hits the age of 18, most parents/ caregivers are faced with the difficult decision of how to be able to support them in life in making key and major decisions, since chronologically they have hit the adult age of 18(eighteen) and require to be responsible for their own actions and consequences. Routinely, Schools and regional centers have referred parents to apply for guardianship/ conservatorship which basically involves going to the courts and petitioning them to strip the neurodiverse individual of their adult rights and provide guardianship of those rights to them as guardians or conservators. This has been seen as an egregious violation of their civil rights by many self advocates who are able to articulate their dissent and discontentment at conservatorship. Are there alternatives to conservatorship where families and caregivers can still be involved and take on the responsibility of supporting their loved ones who have hit adulthood? In order to explore this, On May 21, PRAGNYA invited Darlene Hansen and Ed Hirtzel from Disability Voices United (DVU), to present a workshop titled “With Support and Without the Court”, guiding families and caregivers on how to go about the Supported Decision Making journey with their loved one. The presenters highlighted important points from their Supported Decision-Making handbook for parents of adults with developmental disabilities in California.

Ed started out the presentation giving an overview of conservatorship as it currently exists in California. Adults with disabilities often have little to no control over what to spend money on, how to manage their health care, who they see or spend time with, where to live and who to live with, and who to date or with whom to have intimate relationships. There is a lot of misinformation that conservatorships are the only way to protect adult children with developmental disabilities. The fact is that conservatorships offer NO extra protection against financial scams, physical abuse, sexual abuse or police arrests and jury convictions. Another little known fact is that anyone (not just family members) can be a conservator; half of conservators in the United States are total strangers, and the court can remove parents for any reason and at any time. Conservatorships are costly and there is no way to know what will happen when the parents pass away. Currently there is a bill in the California Legislature, AB 1663, which is proposing changes to the law to overhaul conservatorship.

The good news is that parents do have the ability to protect their children – with support and without the court – through Supported Decision Making (SDM). Simply put, in SDM the neurodiverse individual can choose supporters, which can be Family members, friends, staff, or professionals, to help them make choices. These people on the individual’s SDM team or circle of support can help them understand, consider, and communicate decisions. An SDM arrangement is informal but can be attached to legal documents, and is designed to change as life changes.

Supported Decision Making looks different for every individual. Some of the key elements are:

  • Make sure your adult child’s preferences are respected

  • Communication can be in any way that works best for them

  • Explain choices in a way your adult child can understand

  • Advocate for your child! Don’t let others make decisions for your child,

rush them or force them to make a choice without considering it

  • Provide examples

Darlene and Ed shared several moving real-life examples of how SDM has made a difference in the lives of the individuals that they support.

During the second half of the presentation, Darlene and Ed shared many examples of the forms contained in DVU’s handbook and how to use SDM agreements in many different life situations, including healthcare settings (including mental health emergencies), finances, education, community services, voting and public safety and law enforcement. These documents can be attached to legally binding documents including the IEP (Individualized Education Plan) in the school system, the IPP (Individual Program Plan) in the Regional Center system, powers of attorney and HIPAA authorizations. The following chart gives an overview of which documents to bring or use in which settings:

PRAGNYA will be following up with the people who attended this workshop, and we hope to welcome Darlene and Ed back for future workshops. Currently the SDM Handbook is only available in English, but its translation is underway.

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