CONCORD — Before her death in 2018, Erin Pappas’ rare bone cancer had advanced so far that her mother, Wendy Chase, had to become her legal guardian.
“It tended to drive a stake between our loving relationship,” said Chase, a Democratic state representative from Rollinsford. “I just wanted to be her mom. I didn’t want to control her life.”
This difficult experience moved Chase to author legislation (HB 540) for New Hampshire to join 10 other states that recognize “supported decision-making,” which allows adults with disabilities to retain, with help, their autonomy.
“People with disabilities often simply need what we all utilize from time to time,” Chase told the House Judiciary Committee during a hearing late last week.
Currently, the only legal ways to provide assistance to adults with disabilities are as a court-appointed guardian or as someone who has been granted financial power of attorney or a health care proxy.
A court-appointed guardian is given exclusive power to make all decisions in areas contained in the order — from finances to health care to all life matters.
A family member or friend can serve as an unofficial adviser to a disabled adult, but that relationship has no standing in court or before any administrative agency.
For the past two years, Terry Ohlson Martin has been a legal guardian for her 40-year-old disabled son.
“It is scary to do something differently, if you are not aware how it’s going to be viewed by the professionals in your life,” Martin said.
Rhode Island was one of four states to legalize supported decision-making agreements in 2019.
The American Bar Association and National Guardianship Association have endorsed them.
Disabled children can’t be the subject of these agreements because the law considers their parents to be guardians until they turn 18 years old.
Across the country, 56% of disabled adults have had guardians appointed for them. In New Hampshire, that figure is 76%.
Michael Skibbie, policy director with the Disabilities Rights Center, worked with a coalition of advocates that wrote the bill, led by Rep. Chase.
“We may have people under guardianship in this state who could be successful in other models of support,” Skibbie said.
Those who cannot be a supporter under the bill include employers, employees, anyone who is paid to care for the disabled adult or convicted felons.
“This certainly is something I think anyone should consider carefully before entering into. It is completely a voluntary arrangement,” Skibbie said.
Lisa Beaudoin, executive director of ABLE NH, said adults signing these agreements are less likely to be exploited or abused because they are more aware of their continuing care.
“This is another tool to more fully include people with disabilities in the American Dream,” Beaudoin said.
Sheila Zakre, a Concord lawyer born with a visual disability and the parent of an adult with a developmental disability, supported the bill’s concept but “was put off” by the bill’s language.
The bill states, “Most people with disabilities have the ability to make decisions for themselves when they are provided the necessary information and support to do so.”
Zakre said that’s condescending.
“This perpetuates the negative and untrue and is akin to offering backhanded compliments like ‘You do very well’ or ‘I don’t think of you as disabled,’’’ she said.
Skibbie said supporters of the bill were willing to strip the bill of that language if it’s objectionable to lawmakers.
State Sen. Becky Whitley, D-Hopkinton, said her 39-year-old sister-in-law who lives in another state benefitted from having her own supported decision-making agreement.
“No one should be kept from making decisions about their life based on the support that they need,” Whitley said.
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