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.

Emotions Run High as Group Home Denied

Seems as if NIMBY is alive and well. Despite the slowing of group home development, the attitudes and fears continue at full speed.

HERRIN, Ill. -- More than 80 people — including about 20 who were standing — packed the Herrin City Council meeting Monday, the topic drawing high emotions.
The council had to decide whether to overrule the city’s zoning appeals board and grant a special use permit to The H Group to use a house it purchased as a group home for four developmentally disabled residents.
Speakers on behalf of the group home included Mayor Vic Ritter, Alderman Elizabeth Issler and even a resident of the subdivision where the home is located. She said she and most of her neighbors would not have signed petitions against the group home if a meeting had been held first so they would have known the facts.
A disabled veteran from Marion asked if he could be refused the right to live in his own subdivision because he suffers from service-related stress. His impassioned speech brought the crowd to its feet in tribute.
But in the end, only Issler and Alderman Robert Craig voted for the special use permit; the other six aldermen voted against allowing the home.

California Senate OK's Abuse Bills

SACRAMENTO, Calif. -- Two bills intended to improve police investigations into patient abuse and unexplained injuries at California's institutions for the developmentally disabled passed the state Senate Monday.
The legislation, SB 1051 and SB 1522, would require the state to notify outside law enforcement agencies and disability rights groups when it uncovers allegations of violent crimes against patients. Lawmakers and patient advocates have criticized the state's in-house police force, called the Office of Protective Services