The Economic Downturn , Family Caregivers and Long Term Services

I ran across an article in the NY Times this morning about family caregivers and the effects of the economic downturn in those situations. Whether a person is caring for a senior, a child with a disability or other family member, the downturn hits these families particularly hard because they are trying to balance work and family based on the needs involved. Many have already sacrificed financially to do so , giving up full time jobs for part time work or walking away from the work force to meet their commitments.

In addition, government programs which supplement the help family members provide are facing cuts. Besides lost wages, there are also the out of pocket costs of being a caregiver, which average $5500 a year. (This would include travel expenses, such as gas and meals, hotels, purchasing care items, etc.)

The article discusses several situations facing families and raises quite a few issues that affect the debates we are having about our health care system, including long term care options. Under our present system, family members in their 50's who are caring for an aging parent, for example, and working fewer hours, then face the prospect of financial problems themselves when they become seniors. Because of their sacrifice, they have earned less and will receive a small monthly amount of Social Security benefits, with no retirement package a full time job offers. This will then put them in the same position, needing care without resources, perpetuating the problem.

Rather than cutting programs which provide supplemental help, we need to find ways to channel resources toward these families. As seniors live longer, it makes financial sense to make it easier for them to receive ongoing care, when it becomes necessary, in their homes. Those with disabilities who are advocating for the Community Choice Act (which would end the institutional bias of Medicaid funds) already realize, at a younger age, what issues face people when care is necessary. Our all -or-nothing approach of forcing people into nursing homes no longer works and is costing us too much. The option of using private care agencies with a family's income often exceeds the income a family caregiver can earn. We need to take a step back now and see the bigger picture with this issue.

When an individual requires assistance with meals, bathing and other activities of daily living, programs can be devised that are cost efficient, but only if we begin to face the reality that the need is only going to get greater as baby boomers age.

Long Term Services and Support:: Congressional briefing and a video

from the JF Activist blog:

FOR IMMEDIATE RELEASE:

HELP COMMITTEE HOLDS CONGRESSIONAL BRIEFING ON HEALTH CARE REFORM AND LONG-TERM SERVICES AND SUPPORT

WASHINGTON, DC— Health, Education, Labor and Pensions (HELP) Chairman Edward M. Kennedy is committed to health reform that ensures vulnerable populations have access to coverage that meets their needs, including long-term services and support. On Monday, June 8, 2009 the Committee will host an open press Congressional briefing to provide an update on current HELP efforts to include long-term services and support in health reform.

Senator Tom Harkin (D-IA), a HELP Committee member and long-time advocate for individuals with disabilities, will be joined by senior Congressional staffers Connie Garner and Lee Perselay and Dr. Barbara Manard, from the American Association of Homes and Services for the Aging (AAHSA). Also participating: Mike Oxford of the Topeka Independent Living Resource Center and two-time Purple Heart Recipient and disabled Vietnam Veteran John Henry Douglas from Lake City, Florida.

WHO: Senator Tom Harkin (D-IA)

Connie Garner, Disability and Special Needs Population Policy Director for Senator Kennedy

Lee Perselay, Disability Counsel for Senator Harkin

Barbara Manard, Ph.D., Vice-President of Long-Term Care/Health Strategies for the American Association of Homes and Services for the Aging (AAHSA)

Mike Oxford, Executive Director of the Topeka Independent Living Resource Center

John Henry Douglas, Disabled Vietnam Veteran and recipient of two Purple Hearts, Lake City, FL

WHAT: Congressional briefing on long-term services and support

WHEN: 2:00pm Monday, June 8, 2009

WHERE: Russell Caucus Room (SR 325)

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from Nick's Crusade:

Fighting For The Community Choice Act from Alejandra Ospina on Vimeo.

This, the Seventh Nick's Crusade Video Blog, is a music video/photo mashup of ADAPT protests for housing and the Community Choice Act. For more information, go to http://adapt.org

Immediate Empowerment

First a hat tip to Media dis&dat.

Imagine a device that allows deaf-blind people to instantly communicate with those around them. Sound like Star Trek?

Well, it's here. It's called the DeafBlind Communicator and it allows deaf-blind folks to make phone calls and engage in face to face communication. Washington state and HumanWare designed and manufactured it jointly, in a government -business cooperative effort that has resulted in immediate empowerment for those who have access to this technology.

How does it work?

For face-to-face conversations, the deaf-blind person hands the separate smaller device with a text display and keyboard to the person they want to communicate with.

A retractable tether is attached. With one click, the deaf- blind person who is operating the other half of the device sends the following opening message; "Hi, I’m blind and I can’t hear. To communicate with me, type a message on this keyboard and press (the return arrow)."

This message is both spoken through speakers and displayed on the text screen. The person who is deaf-blind can read the response via a display with Braille characters. Both parties can then communicate back and forth.

via Washington State Dept. of Social and Health Services site

People who were approached with the device "felt good" about the interaction and had no problem using it.

For those living in Washington state, the $8000 device is free or available on a sliding scale, with a cost reduction to $6000 due to the state's participation in designing the device. Free training is provided with the device.

For more information, go here to visit the Washington state site
or here to visit HumanWare.

"He's able bodied...."

I've seen this video before and thought I'd share it here since I'm short on time for blogging. It shows an able bodied man in a world designed for disabled people and is from "Talk" by the UK Disability Rights Commission.

Clip from "Talk" by the Disability Rights Commission (UK)

Photos, old, new and those to come

Among the photos my mom recently gave me is a picture from my law school graduation.

I am standing in front of the Renaissance Building in Detroit in a black gown, looking ready to take on the world, my cap askew, my feet askance, my face adorned with a wide grin.

There are other photos. My Holy Communion day in a frilly white dress that I didn't want to wear, that covered bandaids from falling on roller skates. (I did like the white patent leather shoes, however.) My eighth grade graduation picture in a gold gown, standing with my grandmother. Baby pictures and a picture of me as a toddler in a plaid jumper suit holding my teddy bear.

"What was its name?" Meredith asked.

"Bear," I said. "Original, huh?"

"That's okay, mine was named Panda."

"Clearly we're both creative geniuses," I said.

We laughed. Then Meredith looked at me and said 'I've never seen pictures of you standing before."

There was silence for a moment. I realized that I don't think about standing - at least not literally- anymore. In older photos I am standing and now I sit in a wheelchair. It just reflects the way I move in the world - or moved in the world at that time.

Moving in the world is the important thing, as far as I'm concerned. And I have a great story about a shaker and a mover today.

Ben Berlin , a high school junior, is the first person on the autism spectrum to serve as a Congressional Page. He's also a member of JROTC and is an ambassador for People to People this summer, traveling through Europe.

He plans to attend college and possibly major in engineering. I look forward to seeing his graduation pictures.

[image description: 17 year old Ben is shown,dressed in a plaid jacket and a white T shirt, standing in front of the Shaker Heights Naval JROTC emblem, which is a gold eagle over a ship with the words encircling the image.}

Words that last a lifetime

Over at CNN, Bob Greene wrote an article on Sunday that touched my heart, about how the gracious words of a grocer during her childhood lasted in 80 year old Virginia Florey's memory for years. She and her friend Charlotte stopped into the grocery store every morning to buy a candy bar to split.

Charlotte and I would have a nickel, and we would buy a candy bar to split between us every morning. We would stand there in front of the man who owned the grocery and decide which kind to buy each day -- Butterfinger, or Milky Way, or Oh Henry!, or Hershey bar. We always talked about which one we wanted to spend our five cents on. We weren't very fast about it.

"And. . . ."

Here, Virginia Florey's voice grew almost wistful as she remembered it; here, almost 70 years later, you could hear the gratitude in her tone:

"He was never impatient with us. Never once."

Greene writes about the power of these words and memory, lasting despite all that happened over the years to Virginia. He calls them "small echoes of kindness" and posits that there are stories like that for many - words of encouragement, kindness or gentleness .

So I'm going to pause for a moment today and think about those moments in my own life, words that I recall when I need encouragement, kindness or gentleness in my life - gifts I've received from those who were spiritually generous.

It was a God thing

She was riding on the side of a four lane highway on her power chair. There wasn't really a shoulder at spots, allowing her a safe margin from the cars whizzing by, but my guess was she was heading somewhere important out of necessity.

I drove past her, then pulled into a parking lot driveway in front of her, honked my horn and lowered my window.

"Want a ride?," I asked.

"You bet," she said, as a car whizzed by, kicking a stone up that pinged off her chair.

So I let down the ramp and she rolled on. We had a nice chat about how we both have dodged becoming wheelchair pedestrian statistics. She told me she couldn't use her car any more now that she was in a power chair. The bus route was in the opposite direction of her destination and she said sometimes they passed her by or didn't lower the lift.

It turned out she was headed toward a nursing home. Her father is very ill and she hasn't been able to see him. It was miles down the road, so when I dropped her off there I told her I'd come back to take her home.

When she got home, she went down the ramp and turned to me.

"It's a miracle, isn't it, the way you came along?" she said.

I nodded.

She began to cry, but waved and kept rolling.

Yesterday I found out that my friend Stacey died of cancer. She was a good hearted soul and I'll miss her. Stacey was my aide for a short time. She always brought a smile and a hug. I know she was a spiritual person, because her actions told me so.

I can't say anything more about her right now. I'll miss running into her down here on Earth. But I do know she would have loved this story. She would have said "That was a God thing."