1. Senior Executive Officer, Individual & Family Support
SNA Armchair Chat: Autonomy, Decision-Making Supports, and Guardianship
Robin Shaffert
Senior Executive Officer, Individual & Family Support
July 18, 2017

2. Promoting Autonomy
The Arc (in collaboration with AAIDD) adopted a new position statement entitled, “Autonomy, Decision-Making Supports, and Guardianship”
The new statement replaces the guardianship position statement
It promotes autonomy, emphasizes use of less restrictive alternatives, and calls for standards for guardians

3. Promoting Autonomy (cont’d)
The statement takes a significant step forward towards:
presuming competency,
recognizing the rights of people with disabilities, and
emphasizing the importance of providing people with disabilities access to supports to develop decision-making skills
rights/Autonomy-Decision-Making-Supports-and-Guardianship

4. Part of a Broder Movement to Presume and Preserve Capacity
UN Convention on the Rights of Persons with Disabilities
Supported Decision-Making (SDM)
Court decisions
New laws in Texas and Delaware
National Resource Center for Supported Decision-Making
Note that our position statement isn’t limited to SDM but recognizing a number of ways that support can be provided.

5. Part of a Broder Movement to Presume and Preserve Capacity (cont’d)
Principles and Position Statement of the National Guardianship Association
ABA Practical Tool
The ABLE Act
The person with the disability is the owner of the ABLE Act and can control the account with or without supports. This calls us to help people with disabilities develop financial literacy and decision-making skills.

6. Key Elements of Position Statement
Presumption of Competency
If limitations imposed:
Least restrictive alternative
Due Process protections
Periodic review
Ongoing training and supports to promote autonomy
Right to seek restoration of rights and termination of restrictions
Strict monitoring

7. Key Elements of Position Statement (cont’d)
Regardless of guardianship status, all individuals with I/DD should participate to the maximum extent possible in making and executing decisions about themselves
All individuals with I/DD retain their fundamental civil and human rights (voting, sexual activity, marriage and divorce, birth control, and sterilization) unless explicitly limited by court order

8. Call for System Reform
Addressing conflict of interest between roles of guardian and paid service provider/advocate
Providing access to supports to people to demonstrate competency
Reforming state laws to prioritize less restrictive alternatives to guardianship and limited guardianships over plenary guardianship and to provide time limitations on guardianship

9. Call for System Reform (cont’d)
Emphasizing guardians’ responsibilities towards the person and their legal accountability for their decisions
Requiring states to establish standards and training for guardians

10. The Arc is Working to Advance the Statement’s Principles
Sharing information with people with I/DD and their families about decision-making options through the Center for Future Planning®, its Build Your Plan® tool, and other avenues
Incorporating the principles into trainings for human services professionals on future planning
Promoting SDM and guardianship best practices to our chapters at our National Convention, Summer Leadership Institute, webinars, blogposts

11. The Arc is Working to Advance the Statement’s Principles (cont’d)
Speaking at the National Guardianship Association Conference, Sibling Leadership Network Conference, and other conferences
Participating with the National Resource Center on Supported Decision-Making, the ABA Commission on Law and Aging, Uniform Law Commission - Committee to Revise the Uniform Guardianship and Protective Proceedings Act, and others

12. Promoting Autonomy Requires Change in Many Arenas
Schools should:
Not give legal advice related to guardianship
Develop students’ decision-making capability throughout students’ lifetimes
Financial institutions should:
Recognize the competency of people with disabilities
Accept SDM agreements, powers of attorney (POAs), etc.

13. Promoting Autonomy Requires Change in Many Arenas (cont’d)
Health care systems should:
Recognize the competency of people with disabilities
Accept SDM agreements, POAs, etc.
Comply with HIPAA but not use it to create unnecessary barriers to use of decision-making supports

14. Promoting Autonomy Requires Change in Many Arenas (cont’d)
Legal System should:
Reform of guardianship laws
Adoption of SDM laws
Education of judges, lawyers, and others to explore less restrictive alternatives before guardianship
Families should develop deeper understanding of:
The life-long implications of guardianship
Decision-making options and supports that can be put in place to reduce and manage risk

15. Attorneys Can Play a Critical Role in Counseling Families & Exploring Options
The ABA has developed the PRACTICAL Tool to help attorneys explore least-restrictive alternatives
The tool provides a structure for a multi-faceted, in-depth evaluation of decision-making capacity, risks, and supports
PRACTICAL is an acronym for nine steps to identify and explore options
P – Presume guardianship is not needed
R – Reason
A – Ask if a triggering concern may be caused by temporary or reversible condition.
C – Community
T – Team
I – Identify Abilities
C – Challenges
A – Appoint legal supporter or surrogate
L – Limit any necessary guardianship order or petition
guardianship_law_practice/practical_tool.html

16. How SNA and The Arc Can Work Together to Promote Autonomy
We recognize that many SNA members already incorporate these principles into their practices
We hope that as a community you will lead efforts to incorporate these principles and tools into special needs planning and that you will speak and write about the importance of promoting autonomy and exploring less restrictive alternatives before guardianship

17. How SNA and The Arc Can Work Together to Promote Autonomy (cont’d)
We want to work with you to create this change
What challenges you are facing with families?
What we can do at The Arc to support your work?
How we can work together at the state and local level to promote autonomy?

18. Questions? Contact me! Robin Shaffert shaffert@thearc.org
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