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Little Things Can Make A Big Difference

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To start our series, Disabilities Matter, this week, we look at everyday life. First, we meet Casey and her family. Casey's a little person; she was born with achondroplasia dwarfism. In just the last year, they've retro-fitted the kitchen and bathroom to give her more independence at home. It may be like dropping a pebble in a pond. Martha Foley has their story.

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Casey:  "I had a lot of trouble reaching the sink and  doing the dishes so I would have to use the chair from the table. Bring it over to the sink, climb onto the chair, and reach the sink that way."

The Hewletts have a brand new kitchen. Lots of windows. Table and chairs in the middle. Fridge and stove flank an L-shaped counter to fill one corner. The cabinets are fresh white.

It's pretty much standard-issue kitchen design except that half the counters, and the sink,  are designed for a little person. Casey Lucas, the eldest daughter, was born with acondroplasia dwarfism.

She's four feet tall. The new kitchen is for her.

Casey's stepdad, Francis Hewlett, and her first father helped local contractors install the kitchen.

Francis:  "we actually put in this little cupboard in for her so she has her own microwave where she can actually reach it. So if she wants something (she's can.. easy access to her cupboard. She has her own shelf in the refrigerator for what she would like and it's all down where she, Casey, can reach it."

There are other changes in the house, too.

Casey:  "this is my bathroom.   That they redid back in November  or so (what's dif) they lowered the sink down to my height where I can reach it easier to wash my hands and things. They put a new toilet in, it's called a kindergarten toilet. It's easier for me to get on. Instead of using a step stool and handrail and things. And then they redid the bathtub the door opens and you can walk right in and then when you sit down you can close it and it locks. Easier for me to get in and out instead of having my mom help me. (how did that work before) My Mom was in here washing my hair and helping me wash up and things like that. I get a lot more privacy."

Casey lived without the low kitchen counters and the special bathtub for 17 years. She climbed on chairs and step stools. And she could now, if she had to.

But being able to see herself in her own mirror and share the dishwashing with her sister are more than just conveniences.

Francis:  "the biggest thing for us was her independence... that was the big pusher behind getting all these renovations done...so she would feel like one of us, like her own person so she could do what she wanted, when she wanted." 

Did it work?

Casey: "Yeah, it did . I can do things that I wasn't able to do before. Everything was done... I couldn't reach like the toaster and everything I couldn't reach before everything was redone."

The home renovations were arranged by the Cerebral Palsy Association of the North Country, paid for with government grants through the Developmental Disabilities Service Office at Sunmount.

People with disabilities typically navigate a maze of agencies and services. Besides CPA, there's the state Office of Mental retardation and developmental Disabilities, NYSARC, LEAP, United Helpers, Independent Living Centers

Some families find services soon after a child is born - early intervention is considered a big advantage to long term quality of life.

Casey might be behind the curve because of those 17 years of almost total dependence.

And seeing her obvious delight in the new tub and sink, it seems doubly unfortunate that the renovations didn't happen a lot sooner.

But stepdad Francis Hewlett says the family just wasn't aware of all the help that was available. Even though they'd been in and out of the cerebral palsy offices since Casey was 5.

Francis:   "I would say it was a case of two worlds not meeting soon enough. Basically we were going there for the doctors. We weren't aware of the all the programs that were from the people upstairs... that would be Jan Romano who's her case manager and Shelly Weston. Once we were assigned  Jan Romano, for a case manager for Casey, she was the one who mentioned all the programs. And we were like, 'OK'..."

Shelly Weston is director of community development for CPA. She says many people with disabilities don't receive services until their 30s, 40s or even later.

Shelly: In that particular group I think you would find people who are... distrustful of the state, the county, the bureaucracy. And have generally taken care of their own.. but there are a good number of folks who are much older than Casey when they come in to get services."

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