Wednesday, March 4, 2015

ABLE Accounts, a New Tax-Free Savings

Americans with disabilities and their families often face a myriad of financial challenges, but they will soon have a new financial vehicle allowing them to save for expenses and enjoy tax-free growth similar to 529 college savings accounts. Congress passed the Achieving a Better Life Experience Act on the final hour of the final day of Congress in December, creating a new type of tax-advantaged account called an ABLE account or a 529A.

The hope is that ABLE accounts will help level the financial playing field for families raising kids with disabilities. The National Down Syndrome Society estimates that the accounts will benefit roughly 5.8 million individuals and families.

State Advocacy Group Fights District

ALBANY — An organization charged with safeguarding disabled New Yorkers is locked in legal combat with the North Colonie school district over whether the group should be allowed to investigate allegations that special education students suffered abuse and neglect in their elementary school.
According to court filings, Disability Rights New York last June approached the district, seeking to enter Blue Creek Elementary School after receiving allegations that several youngsters in a special "Academic Skills" class were inappropriately isolated in time-out rooms and restrained.

Opinion: Leave Wisconsin LTC Alone

MILWAUKEE — Governor Walker’s 2015-17 budget proposal would dismantle Wisconsin’s nationally admired long term care (LTC) system that provides critical supports to people with disabilities and older adults to enable them to stay in their own homes and avoid costly institutional  care. Family Care and IRIS currently serve nearly 55,000 older adults and individuals with developmental or physical disabilities, all of whom qualify for a nursing home level of care. These programs, unlike acute and primary health care, provide daily personal supports (such as help with bathing, dressing, and meal preparation), and transportation and support for work and community activities.

Tuesday, March 3, 2015

In N.Y., 'Families Cannot Be Caregivers Forever Campaign' Seeks Funding

Althea Penepent, right with her
daughter-in-law Jeanne and daughter Valerie
BYRON, N.Y. – Althea Penepent often wonders (and worries) what will become of her daughter Valerie after she’s gone. So, Althea has joined a growing number of families across New York State advocating for expanded services for people with intellectual and other developmental disabilities. The “Families Cannot Be Caregivers Forever Campaign” calls current funding in the New York State Budget completely inadequate to meet the needs of these New Yorkers, many living at home with aging parents.

Valerie is the seventh and youngest child of Althea and Richard Penepent, born Feb. 2, 1977. Althea shares that her pregnancy and delivery with Valerie were the same as her first six children. She was blindsided when her doctor came into her hospital room after Valerie was born and coldly stated, “Women over 40 shouldn’t have a child because she’s mongoloid,” then turned on his heel and left. A nurse’s aide called Richard Penepent, plowing snow in the aftermath of the Blizzard of ’77, to come talk to his wife.

Inspired By Son, Former CNN Anchor Pursues Life-Changing Clothing

A study found that mothers of kids with autism have stress levels comparable to those of combat soldiers.
The mental strain stems from both the constant feeling that “anything can happen” and the frustrations associated with the seemingly simple day-to-day activities that most of us take for granted. One such activity that the majority of people can’t even fathom to be so difficult is getting dressed. And we’re not talking about choosing the perfect outfit; we mean physically putting on clothes—a task that takes 30 minutes or more for many with low-functioning Autism Spectrum Disorder (ASD) and is a daily struggle for 21 million Americans with various disabilities.

Monday, March 2, 2015

When Dream Job Felt Like Nightmare

TRENTON, N.J. — When Jennifer Velez was nominated to run the Department of Human Services -- responsible for programs serving one in six New Jersey residents -- she called it her "dream job."

In that post, she oversaw the largest state agency, serving the disabled, elderly and poor.
And as Velez prepared to leave that position last week after eight years -- serving longer than anyone in state history -- she agreed it was "the honor of my life to be here."
But there was one day, she conceded, where the dream job felt more like a nightmare.

An Aging Mom Learning to Let Go

Such an important story and we were happy to participate.
When Mary Kate Graham, 40, was a baby, people would often ask her mom if she thought something was awry, as the infant had trouble sitting up and changing position on her own, and was preternaturally quiet.
“I kept saying, ‘She’s just a good baby, can’t you believe that?’” Mary Kate’s mom, Maureen, tells Yahoo Parenting. She is sitting on the couch in the Brooklyn three-bedroom apartment she shares with Mary Kate, who is at her side. Next to Mary Kate is her older sister Meg, who lives four flights up in the same building with her husband and 8-year-old son. “God knows I needed a good baby — she was my sixth!” she adds with a throaty chuckle, and all three women burst into good-natured laughter.
But Maureen says she even rebuffed the professionals who noted her daughter’s stillness at a nearby early-intervention clinic, where she was already in the midst of having a school-age son assessed for a learning disability that turned out to be dyslexia. “I would just say, ‘There’s nothing wrong with her,’” she recalls. “Denial,” she adds, “was where I was living.