A Continuum of Support: Questions of Rights, Choices, Competency, and the Guardianship

Within the community of parents of individuals with IDD (Intellectual & Developmental Disabilities), the expectation is that parents will pay to get court-ordered guardianship when the individual turns 18 years old and becomes an adult.

The reasons for pursuing guardianship are multi-faceted:

• Parents are told by the public school IEP committee that they will not be part of the IEP committee and can only attend the IEP meetings if they can get the individual to invite them. This leads to the feeling that guardianship is the only way to maintain input in the special education process. In this case, guardianship is a way to protect the individual from the school.
• Parents are misled to think that guardianship is the only way to protect the individual from legally binding contracts and situations with the police. But only in person support can prevent harm from happening. Guardianship may be a way to clean up part of a mess, but not prevent and protect.
• This condemns an adult with a disability to a perpetual childhood – first parents make all decisions, and then, when the parents are no longer able to serve, a complete stranger may be appointed to make every choice for the individual. These professional guardians are often making choices for dozens of people, and tend to push their wards into institutions.

Guardianship is the most restricted option on the continuum of support, and recent Court cases have led to the exploration of less restrictive options.

Read about Court Cases:

• Justice for Jenny – an adult with Down Syndrome challenges her parents’ guardianship and wins (additional article from ACLU)
• 8 additional cases

Reforming Guardianship in Texas

As part of the Guardianship Reforms enacted in 2015, the 84th Legislature passed two bills establishing Supported Decision-Making:

1. HB 39 – Alternatives to Guardianship; and
2. SB 1881 – Supported Decision-Making.

For the first time, the Texas Legislature mandated that probate courts consider alternatives to guardianship and supports and services before a guardianship is created.

Alternatives to Guardianship in the Texas Estate Code

1. Medical Power of Attorney
2. Durable Power of Attorney
3. Declaration for Mental Health Treatment
4. Representative Payee
5. Joint Bank Account
6. Management Trust
7. Special Needs Trust
8. Designation of Guardian Before the Need Arises
9. Alternate Forms of Decision-Making Based on Person-Centered planning;
10. Supported Decision-Making agreements

Supports and Services defined in Texas Estate Code

“Supports and Services” mean available formal and informal resources and assistance that enable an individual to:

1. Meet the individual’s needs for food, clothing, or shelter;
2. Care for the individual’s physical or mental health
3. Manage the individual’s financial affairs; or
4. Make personal decisions regarding residence, voting, operating a motor vehicle, or marriage.

Texas’s Supported Decision-Making Pilot Project

Texas was the first state with a pilot program designed to try Supported Decision-Making as an alternative to guardianship.

Under a bill passed by the legislature in 2009, a pilot run by the Arc of San Angelo and created by Texas Department of Aging and Disability Services (DADS) demonstrated how volunteers can support individuals with intellectual, developmental and other cognitive disabilities in making decisions about their own lives.
The three-year Pilot trained volunteers to assist in decision-making based on the principles of self-determination and matched them with individuals with disabilities with shared interests.

This section adapted from this DRTX Powerpoint.

Competency

The decision between guardianship, alternatives, and services and supports is made by determinations of competencies – of the individual and of the tools.

The American Civil Liberties Union has created 2 great tools to evaluate these things:

1. Beyond the Binary Competence Evaluation Tool:

2. Brainstorming Guide: How Are We Already Using Supported Decision-Making?

Supported Decision-Making can sound like a new, foreign idea.

• But most families, people with disabilities, and advocates are already using supported decision-making, even if they don’t call it that.
• In fact, most people without disabilities are also already using supported decision-making!
• Supported decision-making means helping a person understand, make, and communicate her own decisions.

This tool can help people brainstorm ways that they are already using supported decision-making, and think about new ways supported decision-making could help the person with a disability learn to make their own safe, informed choices. Link to download PDF.

Stories of Supported Decision-Making

Read lots of stories of individuals path to Supported Decision-Making!

Restoration of Capacity

If an individual would like to have their capacity restored, availability of services and supports can be used to make this transition.

According to the Texas Administrative Code:

• A guardianship shall be closed when the court finds that the ward has sufficient capacity with supports and services to care for himself or herself and to manage his or her property. Tex. Est. Code § 1202.001(b)(2).
• A ward or any interested person may petition the court for the full or partial restoration of rights, including the right to decide their residence if he or she has sufficient capacity with or without supports and services. Tex. Est. Code § 1202.051(3).
• The court shall consider whether the guardianship is needed and specific power or duties of the guardian should be limited if the ward receives supports and services. Tex. Est. Code § 1202.151(a).
• The court order must state any supports and services needed for the restoration or modification of the guardianship. Tex. Est. Code § 1202.154(a)(4).

REQUIRED FINDINGS

• Before ordering the settlement and closing of the guardianship, the court must find that the person is no longer partially or fully incapacitated.
• Before granting additional powers or duties to the guardian, the court must find that the current nature and degree of incapacity warrants modification and that some or all rights need to be further restricted.
• Before limiting the powers or duties granted to the guardian, the court must find that the nature and degree of incapacity, with or without supports and services, warrants modification and that some of the individual’s rights need to be restored, with or without supports and services. Tex. Est. Code § 1202.153.

Read more about it on the Disability Rights Texas Alternatives to Guardianship and Supports & Services.

Resources

• DRTX: Supported Decision-Making Resources
• DRTX: The Right to Make Choices: Supported Decision-Making Comprehensive Toolkit
• ACLU: Supported Decision-Making and the Problem of Guardianship
• ACLU: Supported Decision-Making Resource Library
• ACLU: Frequently Asked Questions about Supported Decision-Making (Download PDF)