Judge Denies Guardianship to for Groom-to-Be with Down Syndrome

Talk about self-direction and person-centerd planning ... powerful decision.

A Brooklyn Surrogate Court judge denied a guardianship petition sought by family members of a 29-year-old man with Down Syndrome, saying their objection to him marrying was an insufficient basis for appointing them guardians.

Surrogate Court Judge
 Margarita López Torres

"The right to have a family of one's own is not reserved only for persons with no disabilities," Surrogate Margarita López Torres said, "and the yearning for companionship, love, and intimacy is no less compelling for persons living with disabilities."

Fighting for Disability Rights

Amazing story from Croatia by Human Rights Watch. “I want to leave but I can’t,” Ana told me. “I have a guardian. I told my sister and my doctor [that I want to leave this place], but my guardian has a say.”Ana is among 18,000 people with intellectual or psychosocial disabilities placed under guardianship in Croatia, and stripped of their legal capacity – the right to make basic decisions - to marry and form a family,  to consent to medical treatment, or to sign an employment contract. A significant majority have been placed under full guardianship, under which guardians – often nominated by the state – make all decisions for them.But that’s about to change.

Oregon Families Fight New Provision of Affordable Care Act

SALEM, Ore. — Deana Copeland has cared for her 22-year-old, medically fragile daughter since she was born, but she's afraid that a new provision of the Affordable Care Act could force her to place her daughter in foster care.

Deana Copeland, right, has cared for
her daughter, Andrea Hood, since
she was born.

Her daughter, Andrea Hood, suffers from cerebral palsy, spina bifida and autonomic dysreflexia, a potentially life-threatening condition, and requires around-the-clock care. Copeland is both Hood's legal guardian and paid service provider, for which she receives $1,400 a month.

"I could never expect somebody else to address her needs the way I do," said Copeland, a Cornelius resident. "In our specific situation, it is going to cost the state exponentially more to do less care for Andrea if Andrea has to be cared for in a center."

That's because a new provision of the Affordable Care Act set to go into effect Jan. 1, 2014, would largely prohibit guardians from serving as the paid caregiver of an adult child with developmental disabilities. Disability rights advocates and state officials are fighting the provision and say it could restrict family flexibility and choice, especially for single parents who serve as guardians and use the caregiving allowance to stay at home.

Opinon: Disability No Excuse to Deprive Person of Civil Rights

Post from Susan Mizner, Director of Disability Rights Project of the ACLU.

The guardianship system in this country raises serious concerns. That's why the guardianship trial of Jenny Hatch, a vibrant and active 29-year-old in a battle over who controls her life, struck such a chord. Jenny spoke for many other

Jenny Hatch

people with disabilities when she said clearly in her trial: "I don't need guardianship. I don't want it."

Va. Woman Wins Case; Moves in with Friends

A 29-year-old Virginia woman with Down syndrome who successfully fought her mother's attempt to be her guardian has moved in with friends, according to one of the people she now lives with.In a case watched carefully by advocates for people with disabilities, Margaret Jean Hatch, who is known as Jenny, had been fighting for nearly a year to be able to choose where to live. She succeeded on Friday.