Tuesday, February 24, 2009

Dear Arizona Legislature

I would like you to Meet Marianne McHugh.

Marianne was born 29 Nov 1930 in Nanticoke, Luzerne County, PA. She was the oldest surviving child of Joseph Dennis McHugh and Mary (Hodick) McHugh. She was born with Down Syndrome in a time when children born with Down Syndrome were quite often put in institutions to live their lives with little contact with the outside world. There wasn’t much hope for children born with Down Syndrome.

Marianne’s parents were told to lock her up, she’d never accomplish anything. They refused. They kept her home and raised her as their own. She didn’t go to school; that sort of thing didn’t happen to children with Down Syndrome in the 1930’s. But if there was a family gathering, she was there. Even if it was at the local park, or a store, or a restaurant. If the family was there, Marianne was too. If her younger brother and sister had friends over, they stopped to say hi to Marianne too. She was loved by everyone in the family-- a favorite of her elders and her peers alike. Marianne McHugh had a pretty good life for someone with Down Syndrome born in 1930.

Marianne McHugh died 28 April 1978 in West Seneca, Erie County, New York. She was 48 years old. A very good life span for someone with Down Syndrome born in 1930.

Marianne was my father’s oldest sister.

Though there are many ancestors I wish I’d known, she is the one I wish I’d known better. I was thirteen years old when she died. But I have thought of her many times since, especially in my adult years as I work with children with special needs. I often wonder what kind of life she would have had, had she been born in my era and not her own. She would have gone to school. She might have participated in Special Olympics. She might even have been able to live independently with supports to assist when needed. Children and adults with Down Syndrome today have so much more working for them than Marianne ever had.

Until 31 Jan 2009. That is the day that, with Jan Brewer at the helm, the Arizona Congress set people with Developmental Disabilities back with SB1001, which contain the following budget cuts to this population (From an email from the Arizona Governor’s Council on Developmental Disabilities [http://www.azgcdd.org/text.asp?REF=default.asp]):

Suspend Non-Residential State-Only Services
93 percent of the children and adults receiving state-only services - more than 4,000 individuals - will lose all of their services such as therapies, habilitation, employment supports, after school and summer programs, attendant care, respite and transportation.

Reduce Provider Rates
Effective March 1, the Department will reduce rates for 850 agency and 3,500 independent providers of home and community-based (HCBS), institutional, and acute services by 10 percent. Since fiscal year 2005, HCBS rates have increased by about 22 percent. In addition, the Department will to address group-home capacity issues and lower enhanced rates for specialized habilitation-communication, specialized habilitation-music, community protection, behavioral health, and day treatment and training.

To summarize, effective March 1, over 4,000 individuals with developmental disabilities will lose physical, speech and occupational therapy – therapies that help them overcome problems that they did not ask for, but that their disorders gave to them. Therapies that help them live as much like you and me as possible; something Marianne could never have aspired to, thanks to her being born in 1930.

Thank you, Congress, for wiping out 79 years of progress for people with developmental disabilities.

Colleen McHugh, LMSW

Note to my blogging friends and readers: Yes, I did send this to my legislators.


Miriam said...

Oh, Colleen, I am so sorry to hear this, but glad you wrote your legislators. Shame on them!

As someone who works with special needs children, I know that many of the services that you have mentioned don't just "raise the quality of life" for these individuals, but actually keep them healthier and safer. It's one thing to take away a better life; but it's another thing to take away life itself, and I'm afraid in many cases that's exactly what has happened in Arizona.

wendy said...

so instead of budgeting for services to improve quality of life and more "independent" living, they will be spending more on services that will now be needed because of budget cuts?!
Thank you for sharing this story (again) about your aunt. It's very inspirational (except for the Arizona legislature!)
Wendy at