This testimony is available as a PDF here.
Dear Senators Blumenthal and Cruz,
On behalf of the Autistic Self Advocacy Network (ASAN), I appreciate the opportunity to
provide written testimony concerning the effects of guardianship on people with intellectual and
developmental disabilities, including autistic people. ASAN is a 501(c)(3) advocacy organization
run by and for autistic people ourselves.
ASAN has a longstanding interest in promoting alternatives to guardianship. By taking away our
right to self-determination, guardianship affects all aspects of our lives, including our rights to
live in the community, exercise control over our own bodies and our own healthcare, seek
employment, exercise parental rights, and even vote. It is not uncommon for
guardians—especially professional guardians—to spend little or no time communicating with the
people they were appointed to assist. As a result, people under guardianship often have little to
no input in decisions about their own lives.
Even if a person is later released from guardianship, they may face lifelong challenges. For
example, one woman we assisted was denied admission to her state bar because she had once
been under guardianship.
Years of advocacy have taught us that guardianship reform is not enough. Although we support
additional safeguards for guardianship, such as access to legal representation and protections
against fraud and abuse, these safeguards would not change the fact that people under
guardianship experience a profound loss of autonomy and face significant barriers to full
community integration and participation.
Alternatives to guardianship, such as supported decision-making, enable people with disabilities
to receive the support we need while maintaining our dignity and right to self-determination. The
supported decision-making model enables people to choose who supports them and when. This
Supported decision-making has gained increasing recognition as an alternative to guardianship,
even for people who need significant support. In 2012, a New York judge recognized that
guardianship was an unnecessary deprivation of constitutional rights in situations where
alternatives, such as supported decision-making, are available.
In 2013, Jenny Hatch won her petition to be freed from guardianship and to use supported decision-making instead. Since then, numerous states have passed legislation recognizing supported decision-making. Supported decision-making also enjoys support from most major organizations focused on disability and aging and from prominent groups of experts on guardianship.
Nevertheless, guardianship remains extremely common. It is still extremely easy to be placed
under guardianship and prohibitively difficult to escape from it. People may be placed under
guardianship without ever having an opportunity to appear at an in-person hearing. Courts
remain uninformed about available alternatives or may incorrectly assume that, by the time a
case reaches them, all available alternatives have already been tried. Service providers also may
advise families to petition for guardianship or may initiate their own guardianship petitions
without first exhausting other options.
We urge Congress to promote alternatives to guardianship on a federal level. Congress should
provide permanent funding for the National Resource Center for Supported Decision-Making.
This valuable resource for courts, advocates, and community members, initially funded through a
grant from the Administration for Community Living, is now unfunded. Congress should also
ensure that federally funded programs, including special education services and adult protective
services programs, do not become “pipelines” into guardianship. Grant programs could help
support state pilot projects and demonstration projects to identify best practices in supported
decision-making. Collecting comprehensive data on guardianship—including data on the type of
guardian, the length of guardianship, the person under guardianship’s primary type of disability,
and demographic information on both the guardian and the person under guardianship—will also
help inform advocates and researchers.
I am attaching a short set of recommendations for federal action to promote alternatives to
guardianship that ASAN had previously provided to Senator Casey’s office. I would appreciate the opportunity to speak to your offices in further detail. I can be reached at scrane@autisticadvocacy.org.
Thank you,
Sam Crane, Legal Director
Autistic Self Advocacy Network