Supported Decision Making

Supporting Independence

New guardianship alternative creates opportunities for clients

In our last blog post, we learned about The Arc’s Guardianship Program and what the process and results looked like for 15 families. Now we explore the recent advancements in the protection of rights for individuals with intellectual and developmental disabilities (I/DD).

When the judge’s gavel echoes in court, legal guardianship deems the adult with I/DD as incapable of making their own decisions and transfers their rights to the chosen guardian. Hearing the question, “Do you deem the ward to be incapacitated?” can evoke some furrowed brows. While the legal process is necessary and effective for some, the verbiage often implies dehumanizing rhetoric. Placed in a situation of black and white options, the individual either surrenders the entirety of their rights to a guardian, or undergoes total autonomy with legal barriers separating them from support. These were the drastic options until recently, when doors where opened for a middle ground.

According to the UT School of Law Continuing Legal Education, “The growing trend is away from guardianship and toward alternatives that allow the person to make their own life decisions” (Weeks).*

Advancing with this momentum, The Arc of the Capital Area has begun facilitating the newest alternative to legal guardianship: Supported Decision Making Agreements (SDMA). It is an opportunity available to any adult with I/DD who is capable of making sound decisions, but would like to maintain support from their parents or a trusted adult in their life. The agreements are free and only require two adult witnesses. SDMA went into effect in September 2015 with Texas paving the way as the first state to approve this legislation.

Partnering with the UT Clinical Law School, Kerim Peirce, LMSW, The Arc’s Manager of Family & Juvenile Transition Services, has been active in facilitating SDMAs by interviewing adults with I/DD about their future goals and discussing good decision-making.

A client of The Arc of the Capital Area was recently very excited about making his own decision to sign an SDMA as one of Kerim’s first clients to do so. This individual has a medical condition that affects intellectual functioning. From day one, he has endured numerous medical procedures, many of which were new and experimental at the time. However, physical alterations such as a titanium rib cage never dampened his ambitions. Since he received the choice to sign an SDMA, he was able to retain many of his rights while requesting the help of his parents. His parents were relieved to continue to support and protect their child, especially with his significant medical needs. This trailblazing middle ground provides an avenue for support without compromising an individual’s decision-making rights.

In this upcoming Guardianship session, The Arc of the Capital Area is excited to continue facilitating opportunities to guide families through the legal processes of Guardianship, as well as opening the door to the new path of Supported Decision Making.

For more information and forms, see: Supported Decision Making for Families and Supported Decision Making for Self-Advocates

*Weeks, Tresi. Supported Decision Making: The University of Texas School of Law Continuing Legal Education, 5 Feb. 2016. Web.

Transition to Adulthood

Transition to Adulthood

Families commit to continued care through Guardianship

IMG_0038The 18th birthday of an individual with an intellectual and developmental disability is a time of celebration and cake – along with many legal challenges and opportunities.

From October 2015 to May 2016, a group of 15 families with qualifying low-income levels were guided through the legal process of obtaining guardianship for their children or family members with I/DD. The Arc of the Capital Area’s Guardianship Program provided workshops and assistance over five monthly meetings to navigate the many necessary forms and evaluations.

The Guardianship program transformed the usually expensive, extensive process of obtaining guardianship into one of opportunity and accommodation. Families were connected to pro bono attorneys and low-cost legal resources. For eight of the families who spoke only Spanish, The Arc’s bilingual case managers translated documents, provided one-on-one clarifications, and overcame the language barriers in the legal system.

“The families who go through the program together really get to know each other and are even exchanging phone numbers by the end of the program,” said Kerim Peirce, Manager of Family & Juvenile Transition Services at The Arc of the Capital Area. “The program turns a complex legal process into quite a festive thing.”

When the big court date arrived, the probate judge presided over the courtroom with the parents and an attorney on one side of the room, and the adult dependent (ward) and their attorney ad litem separated on the other side. Stiff with trepidation, many parents couldn’t help but feel uncomfortable by the sea of space that separated them from the child that they were used to always having by their side. Equally nervous, some wards answered questions from the judge while others paced around the courtroom.

“The process reaffirms the family’s commitment to care in both a familial sense and in legal terms,” Kerim said. “They are there to protect that person for the rest of their life.”

So what does legal guardianship entail, and why is it necessary? It all comes down to rights and decision-making.

Without guardianship, individuals with disabilities could be left financially, medically, and legally responsible for actions they may not understand or intend to happen. The guardianship of the ward indicates the guardian’s decision-making parameters pertaining to housing, health care, employment, contractual agreements, and finances.  In times of medical emergencies, many families unexpectedly realize that their lack of guardianship limits them from being with their child or making decisions on their behalf. For example, guardian status can be necessary for parents to obtain health records under compliance with HIPAA (Health Insurance Portability and Accountability Act).

We are very proud of these 15 families who successfully obtained guardianship of their loved ones with I/DD this past May. The Arc’s Guardianship Program has big plans for another season of guidance and opportunities for less restrictive guardianship alternatives such as supported decision-making that will be explored in our next blog post.

Photo credit David Carrales



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