Eldercare and Disability Forum

2010-03-04T10:22:00.001-06:00

Reclaimed! Finally got the four blogs back into my google accounts and separated from a flickr blog account. Phew!

Katrina: Opportunity for Universal Design

2005-09-21T10:29:00.000-05:00

There is a time when there is no more poignant reminder that people who have disabilities are far more "handicapped" than one would normally think of. In the devastation of Hurricane Katrina, there were people who died because they could not evacuate the cities they were in! Not only were the standard problems of poverty, medical needs, assistive technology required and accommodations thrown to extreme importance, literally just getting out of their homes was an issue. Thinking of all those trapped in nursing homes, hospitals, hospice care, group home care, even jails - what a horrifying dilema so many people faced. The following article was prepared by Scott Rains, a well-known advocate of "universal design" principles and an expert in the needs of the disabled community for travel accessibility. Now that there is to be re-building, there has never been a better opportunity for a focus on universal design to improve our world. Not just in the Gulf states, but a focus of attention that can spark progress literally worldwide.

Hope from an Unexpected Quarter in Post-Katrina Reconstruction:

Thought Leadership from the Disability CommunitySanta Cruz, CA September 23, 2005

Contact: Scott Rains srains@oco.net

Leadership out of the chaos caused by Hurricane Katrina is emerging from one community hard hit by the disaster – the disability community. Responses range from the issue of safety to the practicalities of economic redevelopment.

On the topic of safety Marcie Roth, CEO of the National Spinal Cord Injury Association notes,

"It is nothing short of a crime that people like wheelchair user Benilda Caixeta were trapped in their homes, unable to escape," said. "We must build every new home with basic features that let people get in and out."

Contact: 301-717-7447, mroth@spinalcord.org

Lodging and accessibility are key to economic recovery as well

"In 2003 tourism to New Orleans alone brought 8.5 million people, and $4.5 billion into the local economy," explains Dr. Scott Rains, travel researcher and publisher of the Rolling Rains Report. "What Katrina has done, amid great tragedy, is faced us with a stark choice. In rebuilding will we literally exclude some people by design?"

An increasing number of experts familiar with the concept of Universal Design want that answer to be a resounding "No!"

Universal Design is a set of seven principles outlining an approach to the design of all products and environments. The outcome is to make them as usable as possible by as many people as possible regardless of age, ability or situation. Increasingly common in the home construction and remodeling industry, Universal Design has spawned a new trend in the hotel industry among innovators such as the Dunas Canteras Hotel in the Canary Islands, the Devil’s Playground in Tasmania, Eria Resort in Crete, and Estate Concordia in the US Virgin Islands. People with disabilities have become a sought after market.

Solid business reasons exist for this approach argues Eric Lipp one of the sponsors of the Universal Access in Travel Symposium & Exposition scheduled for Baltimore, MD December 12-14, 2005. Lipp’s 2002 study on the travel behavior of the then 46 million Americans with disabilities revealed that they spent $13.6 billion on travel annually. With the Baby Boomer generation aging and the general population living longer these numbers are due to rise.

But the adoption of Universal Design is not a foregone conclusion in reconstruction following Katrina. Universal Design in new homes and home remodel projects is common in many parts of the US and the experts point to the human costs of failure to apply it to hurricane reconstruction.

"Current housing stock is woefully deficient in meeting the needs of people with mobility impairments," says architect Dr. Edward Steinfeld, Director of the IDEA Center at the State University of New York at Buffalo (716-829-3485, x329, rced@buffalo.edu).

"Inaccessible houses keep us from entering or leaving on our own," says Eleanor Smith of Concrete Change. "It's illogical to scramble to retrofit existing homes for access and then build new homes with new barriers after the hurricane." (404-378-7455.)

There is an approach to economic development and disaster reconstruction that addresses these issues in areas where tourism is important," continues Rains. "It is known as ‘Inclusive Destination Development."

The World Bank promotes "Inclusive Development" as economic and regional development that allows for full social participation of people with disabilities. "Destination Development" is the phrase used by the tourism industry to describe the strategic application of planning, development, and marketing resources to enhance a location as a desired destination for travelers.

"Inclusive Destination Development" means "allowing for the full social participation of people, including those with disabilities" Inclusive Destination Development is "the systematic and strategic application of resources to render a location a destination of choice for persons with disabilities.

Numerous organizations ranging from the Paralyzed Veterans of America, The IDEA Center at the State University of New York at Buffalo, Concrete Change, the National Council on Disability, ADAPT, and the National Spinal Cord Injury Association have publicly urged officials to integrate Universal Design into post-Katrina planning and reconstruction even as they continue to apply their own resources to the task of recovery.

Contact: Scott Rains

The Rolling Rains Report

1748 Dalton Place San Jose, CA 95132

408.267-4751

srains@oco.net

http://www.RollingRains.com

Background and Further Resources

Background:

Katrina as a Tipping Point for Universal Design Acceptance in the US
http://www.rollingrains.com/archives/000649.html

Will FEMA-funded Post-Katrina Homes be Universally Designed? Visitable?
http://www.rollingrains.com/archives/000663.html

Carnival Cruise Lines & Hurricane Katrina Relief

http://www.rollingrains.com/archives/000639.html

More on Katrina

http://www.rollingrains.com/archives/000641.html

Welcome to California, Katrina Evacuees!

http://www.rollingrains.com/archives/000662.html

Will We Learn From Our Mistakes?

http://www.rollingrains.com/archives/000678.html

Post-Katrina the Paralyzed Veterans of America Call for Inclusive Reconstruction

http://www.rollingrains.com/archives/000669.html

National Council on Disability Advises Bush:

Mandate Universal Design

http://www.rollingrains.com/archives/000670.html

Universal Access in Travel Symposium & Exposition

http://www.rollingrains.com/archives/000679.html

Experts on Disaster Recovery Focus on Long Term Recovery
http://www.rollingrains.com/archives/000671.html

Anne Finger Reflects on Hurricane Katrina

http://www.rollingrains.com/archives/000644.html

What is Sustainable in Destination Development?

http://www.rollingrains.com/archives/000654.html

Further Reading:

Inclusive Tourism: Some Definitions

http://www.suite101.com/article.cfm/18423/114773

Architectural Literacy

http://www.suite101.com/article.cfm/travel_with_disabilities/117512

Getting the Design Right - Inclusive Destination Development
http://www.suite101.com/article.cfm/travel_with_disabilities/115176

The Rolling Rains Report

http://www.RollingRains.com

RollingrRainsNews-subscribe@topica.com

Controversy on flickr.com: Katrina Relief

2005-09-05T12:48:00.000-05:00

Controversy on flickr.com:

Katrina Relief Unacceptably Slow

Morally Indefensible

My current photo is a political statement through art about the insanity of this devastation and the deficit and morally reprehensible federal government response to these horrors and tragedies. The image is now drawing considerable attention and angry comments in the photo stream by some flickr.com members. However, more members seem to appreciate the artwork and my messages. In fact, the image is now #1 for Monday, Labor Day, in the flickr.com "Interestingness" feature of the Explore pages. This means that of the 1.2 million members uploading photos, this image has now generated the most "interest" today.

It seems that there is quite a bit of blame now extending towards victims and defense by reports that these victims perhaps don't deserve aid for the reports of gunfire and looting. I base this one what I read, see and hear in mainstream US media. Wild rumors feed the blame to judge the homeless and evacuees. This defense of federal government response that is far short of meeting critical needs is despicable. This blame of the victims must stop. This rejection of non-jingoistic rhetoric must stop! Stop the insanity never was more apropos than now.

I myself may have been one of those who was NOT ABLE TO EVACUATE for my income is low and I have a disabled adult son. To have the income for a full tank of gas at the ready and a reliable car, let alone the money to head off into uncertainty, well that may have not been my fate at the first warnings of the scale of this disaster.

Many many middle-class and wealthy white folks have been evacuated and are homeless, having lost everything. However, many of these people have contacts and resources from without and will likely survive much better. Overall, the criticism of the relief response is a damning comment on the politics of poverty.

Never before in our American history has there been such a clear example of the degradation of the less fortunate in our own society.

Katrina Relief Auction on flickr.com

2005-09-03T10:50:00.000-05:00

http://www.flickr.com/photos/cobalt/39546634/

Please consider looking at this image in my photo stream, which has links directly into the Katrina Relief Auction group pool. There are over 300 artworks donated so far and accepting bids. All money raised will be directly contributed to the American Red Cross. We are accepting bids to September 15, 2005. This effort is solely on the part of the members of flickr and not sponsored by flickr.

If you are a blogger or know a blogger, please let them know what we are doing online to contribute what we can. You are welcome to look at one of my blogs for a suggestion of what to post online. You're also welcome to post the image I put up in a blog for the purpose of calling attention to this relief effort.

If you support what we are doing, please pass along the word to bloggers, one of our best shots at calling attention to our quest.

Thank you,
cobalt

Remember the Prescription Drug Bush Policy?

2005-08-03T15:45:00.000-05:00

Here are more details to supplement what my earlier post discussed. Everyone will make money, bu the consumers will suffer. It's NOT ONLY "seniors" that are going to have a problem, all those who are already receiving Medicaid Part A and B are automatically being SWITCHED or ASSIGNED to a prescription drug provider. When I called to set up an appointment to review best plans for my son, I was told, "Oh, he is automatically assigned". NO, I do not want that, I want to review and select. It seems that the government program staff are not attuned to what changes are coming and why people will want to review their options! The following is a quoted information piece, forwarded to me today by email from a member of ABIL, A Bridge to Independent Living.

Jumping the gun on Medicare Health plan-retailer teams brief seniors on new drug benefit

By Bruce Japsen Tribune staff reporter Published August 1, 2005

The nation's largest health plans are teaming with chains like Walgreens and Wal-Mart to launch in-store educational campaigns about the Medicare drug benefit as early as this week--10 weeks earlier than government rules allow them to start marketing their plans. Critics contend new in-store campaigns targeting seniors are largely promotional, using an "educational" moniker to skirt the rules, allowing major insurers to get a leg up on Medicare's new $720 billion drug benefit. Drugstore chains and major health plans like Humana Inc. and UnitedHealth Group deny they are violating Medicare's rules on marketing drug benefits to seniors because they are not revealing product- or plan-specific benefits, which cannot be discussed or marketed with seniors until October. In fact, they say they were encouraged by the Bush administration to brand materials and provide education amid confusion and lack of awareness about the drug benefit being added in January 2006 to Medicare, the federal health insurance program for 41 million elderly and disabled in the United States. The drug benefit, estimated to cost $720 billion over 10 years, is expected to provide seniors on average $1,300 in annual drug benefits at a projected monthly premium of $37.

Medicare Part D = Oh Oh, Here it Comes!

2005-07-15T08:53:00.000-05:00

After attending a recent conference all day this week about the changes that are coming from the introduction of "Part D" in Medicare, I am left with the impression that these are NOT good for the consumers yet all good for the medical profession, large corporations, and pharmacies. There is an introduction of "privatization" turning into practice for this large government program. If such is going on now (having been enacted to law in 2003) and the required changes go into effect for ALL who receive it on January 1, 2006, there is a sad harbinger of future events to come. Learning as much as you can about this, and spreading the word is essential to advocacy that must grow to influence some of the destructive elements of this politically-inspired "reform".

Two examples of this system change will demonstrate just a bit of this reform that does not bode well for the benefit of the consumer. The law was written to accommodate big business and powerful lobbies. See below:

1. ALL Medicare recipients will be required to enroll in one of many "plans" for their prescription coverage. If existing consumers do not make an informed choice, they may be rolled over into any random company's plan. This appears to be similar to the phone companies whose "long distance carriers" may be switched without you knowing. For those who are in the categories that will be able to make a choice, it is IMPERATIVE that the choice to enroll be in the "Initial" enrollment. After the Initial enrollments, there will come more and more penalties month by month that are heavy, for those that choose a plan later on. Essentially one must enroll in a plan without having enough knowledge about what each plan covers!

2. An example given to explain how the new reimbursement system works for the businesses and the insurance industry:

- private insurance may now "insure you" for prescriptions only, not for anything else in health and medical coverage. This benefits those who formerly could not get insurance privately at all.

- private insurers and pharmacies are now paid very substantially to provide your prescription. The government will reimburse them at a huge rate, described as "they give you a pill, they get $100 each time you fill your prescription". Private insurers will now "court" Medicare recipients. AND, did you know that the co-pay, co-insurance and actual formularies each company offers may change at will, without notice to you? The cost may change WEEKLY even, written right into the new reform law! Thus one could sign up for what seems like the best company for you (as determined by what they offer for covered brands of medications) and then they can decide to withdraw your particular medication from their coverage!

There are so many elements of the effects on both Medicaid and Medicare recipients that this will take some time to sort out. Next post will detail some more hidden information that the public will want to know to make informed choices. Stay tuned.

flickr and furl great helps to advocacy

2005-04-21T15:01:00.000-05:00

Membership in the photo sharing community flickr
and then in furl
will give disability advocates wonderful ways to connect to articles, forums, blogs, news articles, and images that will be helpful and fascinating. I cannot recommend these hosts enough!

Email to Forum

2005-03-21T15:31:00.000-06:00

FYI, interested contributors of content and links please address email to cobalt and then do the at thing and then add the gmail.com ending...

Changing Client Meds for Staff Convenience

2005-03-19T06:03:00.000-06:00

My son just was placed in his first group home since moving to another state 10 months ago. And I was out of state at a conference, hoping that the staff would get things right and squared away. Wrong. I learned (as I was 400 miles away) that instead of meds given four times a day, in a very carefully planned order, the medication staff set up his med log sheets with ganging all 14 pills together in the morning and then all 8 for the night at once. For his entire life he has had four med times and this was stressed in the staffing last week. He has difficult and precise pharmacology, such that one med is given upon wakeup and then a different form of it in a sustained release is given an hour later with breakfast. He has six different medications in the morning. It makes a big difference the order given and the combination at one time. Two involve a careful calculation of time for one form and then a later sustained release form. One anti-convulsant is also a stimulant, so it must be given at supper, with food. Then at bedtime (10 pm) the other two anti-convulsants and a tranquillizing-form of medication is given. I learned by phone from the new staff that all were ganged into two times daily, only, because "that is how we do it". After two days of phone calls back to the administration of the group home, no calls were returned. I specifically asked that it be resolved by Friday so he would not have to go the weekend with continued pharmacological stress. Guess what, I arrived in the middle of the night on my way home from my conference and had to pick him up to bring him back to my own home until this can be resolved. Of course, Monday will be the earliest opportunity to talk to the doctors and the medication staff responsible for this travesty. I could just scream. My son was knocked out tonight by all the meds given at 8 pm, all the meds which were for 6 pm and for 10 pm. We may have to go to the ER just to get new orders written AGAIN by doctors in three specialty areas so that I can return him to the group home.

The larger issue: how can care givers ignore what is best for the client and boldly decree how the meds will be administered and for their convenience? 25 years of careful pharmacological management, down the tubes due to an agency that wants to do what is convenient for staff. Oh, this is going to be a gggreeeeeaaaaaatttt next few months of adjustment. Now, how do I decide to politically handle this and phrase my language "just so"? There must be a change in the "System" to meed the needs of clients - too bad it must be a forced issue. And now Mother Bear may immediately appear to be one of "those" parents/guardians.

Blast From the Past about Cereal Bowls

2005-03-14T10:07:00.000-06:00

Recording this story into this blog because it is one I forgot happened until last night when my son was attacked in a group home by another client. He is fine, and the attacker is a fine young man who is not known at all for such behavior. Although he was hauled away to an overnight emergency respite and the police were called, it is something that happens to those in dependent care on a regular basis. It is thought that perhaps a recent med change caused this aggressive behavior, so that is being looked into. Yet these situations are not handled at all, not at all as would be with normal young adult men. Just think, normally men could get into a scuffle and they would work it out somehow. Yet if one is a dependent adult, everyone goes nuts and an "emergency call" is made. I think to the time that my own son may act out like his roomate. Yes, it "can" happen. But his life in dependent care makes everything so bizarre and under a microscope. We are truly repressive to people by the tendency to make everything criminal and legal means to sue.
<>

September 21, 2003

How a Cereal Bowl Leads to Psych Ward

Yesterday, my 24-year-old son argued with a young woman. He yelled at her, called her names and tipped his cereal bowl over at breakfast.

So, why the title?

He is in a dependent-care supported-living home where staff is present to assist him and two other disabled young adults. In this case, he argued with his staffer, a young woman who has worked there four months. Like many young men, he does not like to be "bossed around" and he was angry. So he called her a bitch and accentuated his frustration by tossing his cereal bowl over on the table.

What does she do? Calls her supervisor and says she is afraid of him and that he needs to go to a Psych ward.

So the supervisor came and took my son to the local emergency room, where the doctor present was incredulous as to why this incident required an ER trip. The supervisor said that his staff felt threatened, and insisted that my son be evaluated and placed in the Psychiatric unit.

The supervisor called to tell me that my son was going to be admitted. When he told me what happened, I said, "It is not acceptable to have him punished for something so small. This is part of his disabilities," as he has extreme ADD/HD and Organic Personality Syndrome with his major handicaps of hydrocephalus and a seizure disorder. "This would be punishing him for something he can't control. Was it so bad to warrant an ER trip, let alone an admission?"

I reminded the supervisor that this same staff member was responsible for a total of six admissions of the three residents in the four months she has worked at the home. Two for my son, two for a male roommate, and one for the female roommate.

And now she was requesting a sixth Psych ward admission since she "felt threatened" and my son was verbally abusive.

Think ahead to some of the ramifications of group home agency's having such a policy, where the clients must be perfectly docile or they are threatened with being sent to the Psych Ward. Come on!

I immediately called that ER. The doctor evaluating my son said that my son was fine and he did not consider it an emergency. Did I? He said, "Maybe I have to admit him, because the agency says they will not take him home."
"Is he a danger to himself or others?"
No, he was quietly coloring pictures.

The doctor also said that the agency "routinely tries to dump clients here."

I thought it was an abusive situation for one adult to have the power to punish a client so severely for having an argument. He agreed, and he said he would talk with other doctors and recruit a social worker for help because he did not want to admit my son to a Psych Ward.

The ER social worker told me my son was fine, agreeable and still coloring. She did not feel this warranted a trip to ER or an admission.
My son's assigned county social worker also felt it was ridiculous to have brought my son there. He was most disgusted and told her it was most certainly not an emergency and the agency should not attempt to dump his client. It was ludicrous.

She said they most definitely would not admit my son, and further the doctors in the discharge notes would instruct that the agency was no longer to bring my son to ER there for such a thing. Yeah!

Three hours later, I received an irate phone message demanded that I call the agency office within the hour, to discuss their deep disturbance that I hindered their admission of my son to a Psych Ward when it was "only to prevent harm for their staff that they determined he needed to be admitted."

Last night I called my son and casually asked how his day was.
"Not so good," he had a bad headache and felt sick.
"How was work today?"
He didn't go.
"Why not?"
"J. took me to the hospital so I couldn't go."
"Why?"
He didn't know or have any idea!

"Did you get up and have breakfast OK?
My son said "I think so," but a staff person came in his room this morning to wake him up and the staff would not leave his room so he could get out of bed and get dressed."
"Who was the staffer? Was it J or T, K or L?"
"No."
"Then who was it?"
"Oh yeah, it was S".

What happened then? My son could not remember. But he did say that "she would not leave my room so I could get dressed!" and he was really bothered by this.

I am just glad I decided to follow up with him and discuss the incident with him on his level. As I predicted to the doctor and social worker, he did not remember it at all.
So we talked a bit more, and I urged him to inform his night staff of his headache so he could take some medicine. He did this while I waited, since he told me that he hadn't told his night staff about his headache.

When the night staff came to the phone, she said, "Well, maybe that is why he's been in bed since 7 PM tonight!"
It was now 9:30 PM and if I had not called my son, he would have continued suffering all night.
I learned today that shortly after my call he had had a 45 second seizure.

My son is 5'4" and weighs about 85 pounds. The only staffer with whom he has problems with is the same one with whom the other residents have problems -- 22, 5'7" and 250 pounds.
Yet, the agency is up in arms because she "feels threatened" by my son. She'd now done this same thing six times in four months.
Wouldn't a reasonable person think that she is perhaps unsuited to her job?

I am concerned about the larger harm to him and to so many dependent people being abused by an agency that is supposed to be able to care for them and obviously is not doing the jobs.
Is this a horror story just for this particular agency? No -- this is one of the best direct care placements I can see for my son and his needed routines. When the ER doctor told me that the agency does this same thing frequently "because they can't handle client behavior," I realized how much harm is being done.

People in supported-living are often on Medicaid or Medicare. Think of the costs to our government and our society for such neglect and trivia. I would guess that each ER trip is about $500 and a typical three day "observation stay" in a Psych Ward may be about $4,000.
Now do the numbers. Are you mad, too?

I will keep up with this accounting. It's time to record faithfully for my own peace of mind, as well as to record what sadly may be needed for documentation.

I received a call from the agency management today: In the future, they will continue to bring my son to the ER for admission and no other agency is going to dictate to them how to take care of their clients. "We will not drive him to [my son's lifelong hospital center 30 miles away] as the local ER tells us to do if we really think he needs an emergency admission. In the future we will continue to take him to the local ER, and if they refuse to admit him we will call the police every time."

If any of my friends wonders why I decided to move back to the state and locality where my son lives, this account pretty much explains some of the urgency I felt to move back here. And remember, this is one of the better care situations out there.

I've taught Special Ed Behavior Disorder, worked in two residential treatment centers, and worked five years in group homes in another state. I do not make my comments or decisions lightly, for I have been on both sides of care issues from staff to parent.
Signing off for now,
Mother Bear

2005-03-02T20:41:00.000-06:00

This essay by Sunny Taylor gives a powerful look at many issues of concern to those with disabilities. The main focus in on employment and the "right NOT to work". However, her tales of being part of ADAPT's activism is compelling. She describes the history of disability advocacy and recent activism. From September of 2004 she describes a march on Washington DC that was barely noticed by the media. What really caught my eye was her assessment of the importance of the MiCassa legislation to fund independent living arrangements for those with disabilities.
http://www.findarticles.com/p/articles/mi_m1132/is_10_55/ai_114290202

And that is what the September march focused on: the "stolen lives" of the nearly two million people who are currently "warehoused" in nursing homes and Intermediate Care Facilities for the Mentally Retarded (ICFMRs). Over two hundred of us in our wheelchairs went the 144 miles, from the Liberty Bell to Capitol Hill, to protest for the passage of the Medicaid Community Attendant Services and Supports Act (MiCASSA), which would provide in home care for those who are now stuck in nursing homes. America has over 17,000 nursing homes, two-thirds of which are for-profit ventures. MiCASSA would allow people to decide how their individual Medicaid dollars should be spent, instead of funneling them into the $70 billion nursing-home industry. On average it costs $9,692 annually to provide someone with Medicaid Assistive Services. However, the national average annual cost to house one person in a nursing home is $40,784 and the standard of services in these institutions is often shockingly low.

Bush Cuts DDD and Disability Housing

2005-02-25T10:49:00.000-06:00

Bush cuts to DDD and Disability Low-Income Housing

From Skippy the Bush Kangaroo's blog this week. Details most of the public will never know about and it will not be "news".

"with little fanfare, the bush administration is proposing to stop financing the construction of new housing for the mentally ill and physically handicapped as part of a 50 percent cut in its housing budget for people with disabilities.

the proposal, which has been overshadowed by the administration's plans to shrink its community development programs, affects what is known as the section 811 program. since 1998, section 811 has helped nonprofit developers produce more than 11,000 units of housing for low-income people with disabilities, including more than 700 in new york state.

until now, section 811 has provided equal amounts each year, roughly, for financing for new construction, and rent subsidies for disabled tenants. but under the 2006 budget proposal, the capital allocation would be eliminated and the overall budget would shrink by half, to $120 million from $238 million.

...the federal government would discontinue financing housing for people with spinal cord injuries or psychiatric illnesses who are not necessarily homeless but may live in nursing homes or psychiatric hospitals.

by relying exclusively on vouchers, the federal government would essentially be lumping these people with able-bodied section 8 recipients in competing for some of the same apartments."

nytimes

A Growth Industry in Disability

2004-12-09T14:25:00.000-06:00

As I now work completely within the field of Assistive Technology, AND I reside with a young man with developmental disabilities, AND an older man with disabilities, I have not taken time to maintain this site as I planned. But on the good side, boy is there much more material to contribute here. As I said in the title to this post, I have found that disability is a "growth industry". There are more and more folks living with disability than I previously thought, and the baby boomers are coming on up into the lower level disability issues of hearing and vision loss. Growth industry refers to the need for the rise of care and services and also for the employment prospects of those who do direct care and train staff of all types for this care. Back later with some new links for those interested.

When Facing Surgery

2004-08-16T07:39:00.000-05:00

How many times does a person really understand a planned surgery? For the elderly, it is just as essential and perhaps moreso that one has a clear understanding of a surgery recommended to them. There's a clear difference in medical care and procedures from "the way it was" years ago and present standards of medical care. For an elderly person to make an informed decision they must ask questions and receive thorough answers. And perhaps have several follow-up conversations with reviewing their medical needs.

Today this author drove her new housemate to have out-patient surgery on his hand, crippled by arthritis. He does not know what the surgeon will do or even why the surgery is being done. Let alone which hand will be operated on! He will be ready to come home this afternoon and I'll return to get him. I wrote out my contact details and gave it to the office staff checking him in pre-surgery. Now I can only hope that this staff will see to it that the information is directed on through the various medical staff today.

I've told "Bill" that he may have to sign a consent form at the hospital for any staff to talk with me and receive his discharge home health plan. I told him to expect to sign two consent forms pre-surgery: one for the surgeon and one for the anaesthesiologist. A few days ago Thursday I asked him to call his social worker with the VA hospital to see about having a visiting nurse stop in daily following surgery. However he does not know if his social worker got his phone message or if anyone will contact him.

I rented a nice home just two weeks ago and moved myself and my young adult son with disabilities into it, with this man as our housemate. We'd met when I'd rented a "room-for-rent" in the previous home. He'd wanted for years to move to a better home, but had not because he had no furniture of his own. With previous surgeries for knee replacement, foot surgery and who-knows-what else (he's unclear on some of his medical history) "Bill" was reluctant to move to an unknown place. So instead of finding a two-room apartment for my son and I, we found a nice 3 bedroom home so he might join us.

Since my son had an emergency neurosurgery just two weeks ago and has home health nurses coming in daily for 8 hours, I have enough to care for him and work as well. So "Bill" needs to set up anything he can do to have his own needs looked after. "Nursing" is not my "thing" (teaching is) so I can only hope that later today my elderly housemate has just what he needs to recover well. At least I asked for and received his family contact information in case I'd need to call them. They are far away and he's got no family or friends locally to help. I would bet that there are many senior citizens in this position. "The kindness of strangers" comes to mind. But back to the topic of this post: at the least, people can help the elderly facing surgery by helping them to be advocates for their own health care. And perhaps by explaining what they may need to inquire about pre-surgery. If you don't know to "ask the questions" you may be at risk if the professionals who care for you do not thoroughly prepare you. Good advice for all, but especially for the elderly.

Arizona and National Disability Resource Links

2004-07-09T16:43:00.000-05:00

Another round of helpful online resource pages, from the Arizona DES website:

STATE OF ARIZONA

ASSISTIVE TECHNOLOGY / ADA / ACCESSIBILITY

* ADA DOCUMENT CTR

* ARIZONA TECHNOLOGY ASSISTANCE PROJECT (AZTAP)

* JOB ACCOMODATION NETWORK

* NATIONAL ADA TECHNOLOGY ASSISTANCE CENTERS

* SUNSOUNDS OF ARIZONA

* CENTER FOR AN ACCESSIBLE SOCIETY

* U.S.ACCESS BOARD

* WEB ACCESSIBILITY DEVELOPMENTS

* ASSISTIVE TECHNOLOGY RESOURCE CENTER

GENERAL DISABILITY

* COMMUNITY INFORMATION & REFERRAL SERVICES

* CONSORTIUM FOR CITIZENS WITH DISABILITIES

* GLADNET Global Applied Disability Research Info Network on Employment and Training

* RESEARCH INFORMATION FOR INDEPENDENT LIVING

* NATL CLEARINGHOUSE OF REHABILITATION TRAINING

* NATL COUNCIL ON DISABILITY

* NATL REHABILITATION ASSOCIATION

GOVERNMENT
* ARIZONA STATE LEGISLATURE

* AZ COUNCIL FOR THE HEARING IMPAIRED

* AZ DES RESEARCH ADMIN

* DEPARTMENT OF VETERANS AFFAIRS

* LABOR MARKET INFORMATION - AZ

* OSERS NATL INSTITUTE ON DISABILITY AND REHABILITATION RESEARCH

* SOCIAL SECURITY ADMINISTRATION, OFFICE OF DISABILITY

* THOMAS FEDERAL LEGISLATIVE INFORMATION

* JOBS

* AMERICA'S JOB BANK

* ARIZONA CAREER RESOURCE NETWORK

* AMERICA'S CAREER INFO NET

* EMPLOYMENT NETWORK MAGAZINE

* FED WORLD

* O NET OCCUPATIONAL INFORMATION

* ONLINE CAREER CENTER

LINKS FOR THE BLIND AND VISUALLY IMPAIRED

Local:

+ Arizona Center for the Blind & Visually Impaired

+ Arizona Council of the Blind

+ Arizona Legislative Information System

+ Arizona State Braille & Talking Book Library

+ Arizona State Schools for the Deaf and the Blind

+ Foundation for Blind Children

+ Natl Federation of the Blind of Arizona

+Recordings for the Blind and Dyslexic

+ Southern Arizona Association for the Visually Impaired (SAAVI)

+ Sun Sounds Radio Reading Services

National:

+ American Association for the Education and Rehabilitation of the Blind & Visually Impaired

+ American Council of the Blind

+ American Foundation for the Blind

+ Blinded Veterans Association

+ Blindness Related Resources hicom.net)

+ Lighthouse

+ Mississippi State Rehabilitation Research & Training Center

+ Natl Industries for the Blind

+ Natl Federation of the Blind

+ Ron Marriages Resources for the Blind

BEHAVIORAL HEALTH RESOURCES

State:

· Arizona Alliance for the Mentally Ill

· Mental Health Dissemination Network of Arizona

· Survivors On Our Own

National:

*Center for Psychiatric Rehabilitation

*New Hampshire-Dartmouth Psychiatric Research Center

*Internatl Association of Psychosocial Rehabilitation Services

*Natl Alliance for the Mentally Ill

*Natl Association of the Dually Diagnosed

*Natl Empowerment Center

*Natl Depressive and Manic Depressive Association

*Natl Mental Health Consumers' Self-Help Clearinghouse

*Virginia Commonwealth University RRTC on Workplace Supports

New Links for Basic AT Resources for Disabilities

2004-07-06T18:21:00.000-05:00

The following are shared as a starting point for those with disabilities to get more information on resources available in the US. These sites are particularly good on having extended link secions.

BLIND OR VISION IMPAIRED

Arizona RSA Blind

AFB - Am. Federation of the Blind

NFB - National Federation of the Blind

DEAF OR HARD OF HEARING

shhh.org - Hearing Loss

agbell - Alexander Graham Bell org.

asha - Am. Sign - Hand Language

PHYSICAL CHALLENGES

Wisconsin DHFS Disabilities

Spinal Cord.org

SciPilot.org

DEVELOPMENTAL DISABILITIES

ACF.org

Arizona DDD

- - - -

ASSISTIVE TECHNOLOGY AND NATIONAL ACCOMODATION INFO

Closing the Gap

Abledata

Trace - U of Wisconsin

Access Board.gov

US Dept of Justice and ADA

EEOC

Resna.org

At Access.org

Jan - U of W. Virginia

AT RESOURCES - CATALOGS

Blind or Visually Impaired

We Magnify.com

Lss group.com

Independent Living.com

DEAF OR HARD OF HEARING

Harris Communications

Hitec.com

Hearmore.com

PHYSICAL LIMITATIONS

InfoGrip.com

Sammons Preston

Flaghouse.com

Reply to Senate Testimony from Harkin

2004-06-23T23:46:00.000-05:00

Here is my reply from Senator Tom Harkin! I am so very delighted that he took the time to review my testimony on the two legislative issues I covered in this blog this spring. I believe that his response is indicative of his support and brings hope that he will convince other legistlators to make needed changes.

...

Given a real choice, many Americans who need long-term services and
support would prefer to receive them in home and community settings rather
than in institutions. And yet, too often, decisions relating to the
provision of long-term care are influenced by what is reimbursable under
Federal and state Medicaid policy, rather than what individuals need or
want. Unfortunately, under Medicaid, there is a strong bias in
reimbursement toward institutional care over services provided in home and
community settings.

.
I have long believed we should eliminate that bias and put more emphasis
on consumer choice. Long-term services and supports provided under the
Medicaid program must meet the changing needs and preferences of
individuals. Individuals must be empowered to exercise real choice to
meet their unique needs. Federal and state Medicaid policies should
facilitate, not impede, an individual's choice in selecting needed
long-term services and supports.

That is why I introduced legislation, the Money Follows the Person Act
and the Medicaid Community Attendant Services and Supports Act (MiCASSA,)
which would allow individuals with disabilities and older Americans the
freedom to choose how and where they want to live. The Money Follows the
Person Act, which I introduced along with Senator Gordon Smith (R-OR,)
would allow states to receive additional federal resources to provide
community based services to those who choose to move out of a nursing home
or institution. At the same time, I joined with Senator Arlen Specter
(R-PA) to introduce MiCASSA legislation which would require that states
offer community attendant services and supports to eligible individuals in
need of long-term services and supports. These similar pieces of
legislation would still provide individuals with the option of access to
institutional or nursing home care.

As you know, I have always been a strong advocate for persons with
disabilities and older Americans. As an author of the Americans with
Disabilities Act (ADA), its passage into law was one of the proudest
moments of my Senate career. The "Money Follows the Person" initiative
would further the goals of the ADA to give people with disabilities the
equality they deserve and the freedom to choose how and where they want to
live. Be assured that I will continue to make the rights of people with
disabilities and seniors a top priority, and that I will push for prompt
Congressional action on MiCASSA and Money Follows the Person.

Again, thanks for sharing your views with me. Please don't hesitate to
let me know how you feel on any issue that concerns you.

Sincerely,
Tom Harkin
United States Senator

New Today - Technorati Blog Stats

2004-04-30T08:58:00.000-05:00

In Technorati, you can get the links to all blogs linking to Eldercare and Disability Forum. From a search of these, you may find other people who care about dependent care rights. The link is the button in the sidebar column of links and resources.

Definitions and Terms MiCASSA

2004-04-28T15:32:00.000-05:00

We are still waiting... After the introduction of the bill by Senator Tom Harkin of Iowa in May of 2003, the Senate Finance Committe took testimony and held a hearing on April 7. From a search of the Thomas official US government documents and actions website, the following terms and definitions are supplied below. There is no word on any action following this hearing. There was a two week period where testimony was accepted into the Federal record. This author submitted testimony and requested an acknowledgement but to this date has received none. (!) We are WAITING...

MiCASSA, the Medicaid Community Attendant Services and Supports Act

S.971

Title: A bill to amend title XIX of the Social Security Act to provide individuals with disabilities and older Americans with equal access to community-based attendant services and supports, and for other purposes.

Sponsor: Sen Harkin, Tom [IA] (introduced 5/1/2003)

Cosponsors: 18

Related Bills: H.R.2032

Latest Major Action: 5/1/2003 Referred to Senate committee. Status: Read twice and referred to the Committee on Finance.

SHORT TITLE(S) AS INTRODUCED:

Medicaid Community-Based Attendant Services and Supports Act of 2003

OFFICIAL TITLE AS INTRODUCED:

A bill to amend title XIX of the Social Security Act to provide individuals with disabilities and older Americans with equal access to community-based attendant services and supports, and for other purposes

SUMMARY AS OF:

5/1/2003--Introduced.

Medicaid Community-Based Attendant Services and Supports Act of 2003 - Amends title XIX (Medicaid) of the Social Security Act (SSA) to mandate State Medicaid plan coverage of community-based attendant services and supports for certain Medicaid-eligible individuals.

Outlines provisions for: (1) an enhanced Federal medical assistance percentage for ongoing activities of early coverage States that enhance and promote the use of community-based attendant services and supports; and (2) increased Federal financial participation for certain expenditures incurred by the State for the provision of community-based attendant services and supports.

Directs the Secretary of Health and Human Services to: (1) award grants to eligible States which have established a Consumer Task Force to assist the State in its development of real choice systems change initiatives; and (2) conduct a demonstration project for the purpose of evaluating service coordination and cost-sharing approaches with respect to the provision of community-based services and supports to non-elderly dually eligible individuals.

SEC. 201. GRANTS TO PROMOTE SYSTEMS CHANGE AND CAPACITY BUILDING.

(a) AUTHORITY TO AWARD GRANTS-

(1) IN GENERAL- The Secretary of Health and Human Services (in this section referred to as the `Secretary') shall award grants to eligible States to carry out the activities described in subsection (b).

(2) APPLICATION- In order to be eligible for a grant under this section, a State shall submit to the Secretary an application in such form and manner, and that contains such information, as the Secretary may require.

(b) PERMISSIBLE ACTIVITIES- A State that receives a grant under this section may use funds provided under the grant for any of the following activities, focusing on areas of need identified by the State and the Consumer Task Force established under subsection (c):

(1) The development and implementation of the provision of community-based attendant services and supports under section 1935 of the Social Security Act (as added by section 101(b) and amended by sections 102 and 103) through active collaboration with--

(A) individuals with disabilities;

(B) elderly individuals;

(C) representatives of such individuals; and

(D) providers of, and advocates for, services and supports for such individuals.

(2) Substantially involving individuals with significant disabilities and representatives of such individuals in jointly developing, implementing, and continually improving a mutually acceptable comprehensive, effectively working statewide plan for preventing and alleviating unnecessary institutionalization of such individuals.

(3) Engaging in system change and other activities deemed necessary to achieve any or all of the goals of such statewide plan.

(4) Identifying and remedying disparities and gaps in services to classes of individuals with disabilities and elderly individuals who are currently experiencing or who face substantial risk of unnecessary institutionalization.

(5) Building and expanding system capacity to offer quality consumer controlled community-based services and supports to individuals with disabilities and elderly individuals, including by--

(A) seeding the development and effective use of community-based attendant services and supports cooperatives, independent living centers, small businesses, microenterprises and similar joint ventures owned and controlled by individuals with disabilities or representatives of such individuals and community-based attendant services and supports workers;

(B) enhancing the choice and control individuals with disabilities and elderly individuals exercise, including through their representatives, with respect to the personal assistance and supports they rely upon to lead independent, self-directed lives;

(C) enhancing the skills, earnings, benefits, supply, career, and future prospects of workers who provide community-based attendant services and supports;

(D) engaging in a variety of needs assessment and data gathering;

(E) developing strategies for modifying policies, practices, and procedures that result in unnecessary institutional bias or the overmedicalization of long-term services and supports;

(F) engaging in interagency coordination and single point of entry activities;

(G) providing training and technical assistance with respect to the provision of community-based attendant services and supports;

(H) engaging in--

(i) public awareness campaigns;

(ii) facility-to-community transitional activities; and

(iii) demonstrations of new approaches; and

(I) engaging in other systems change activities necessary for developing, implementing, or evaluating a comprehensive statewide system of community-based attendant services and supports.

(6) Ensuring that the activities funded by the grant are coordinated with other efforts to increase personal attendant services and supports, including--

(A) programs funded under or amended by the Ticket to Work and Work Incentives Improvement Act of 1999 (Public Law 106-170; 113 Stat. 1860);

(B) grants funded under the Families of Children With Disabilities Support Act of 2000 (42 U.S.C. 15091 et seq.); and

(C) other initiatives designed to enhance the delivery of community-based services and supports to individuals with disabilities and elderly individuals.

(7) Engaging in transition partnership activities with nursing facilities and intermediate care facilities for the mentally retarded that utilize and build upon items and services provided to individuals with disabilities or elderly individuals under the medicaid program under title XIX of the Social Security Act, or by Federal, State, or local housing agencies, independent living centers, and other organizations controlled by consumers or their representatives.

A Few Good Men and Wimmens Needed

2004-04-24T09:30:00.000-05:00

"This ED Forum is looking for a few good men and women to join together to first find support resources, and next to advocate together for positive solutions to the dilemna of obtaining appropriate care in the least restrictive settings."

This author has not written for a few weeks due to "life". My son is facing this weekend's deadline of temporary stay at a restrictive and inappropriate residential facility. Desparately trying to find another place. Such a place will not be appropriate to his needs, either, but hopefully "better". Hopes pin on a local nursing home that used to be the county "poor farm" - remember those? Remember hearing about "those"?

Additionally, I lost my job as a temp due to the unfortunate timing of my 90 days expiring and non-renewal by company policy and tempered by the many times I had to take off work to go to meetings for, with and about my son.

On the good side (black humor here) since I lost my job I could help my son as he was hospitalized this week for seizures that were quite serious. A little stomach flu or bug caused him to have repeated seizures and ER care then hospitalization till he was stable. Shunt films (he has hydrocephalus), CAT scan, x-rays, blood work: the works. Had to rule out the possibility of causes that could have put him into Neurosurgery.

I continue to collect links to personal journals/websites, blogs and other online tales of real life for a growing portion of our American population. All invited to comment in posts by clicking the "Comment" link below each post. I'd love it if anyone wrote to me (see address in link in sidebar). If you've got links of resources and support, please send them along this way.

All for now,

Edforum

Amazing Disability Specialist Publishes New Book

2004-04-08T20:39:00.000-05:00

Just had to copy into this blog a record of the work of John W. Wilde, a specialist in disabilities who has a tremendous website that is a wealth of information and links to anything most advocates need to be in touch with. Take a look at the recent book just published. I will try to get this at my local library. He published it through eUniverse, a publisher I am not familiar with. Below is a snip from the website he maintains. Tells about the book, the author and there are links further on in this post to get you to his website encyclopedia of Disability Resources.Highly recommended are the links to the history of disability rights: one must know where we've come from to appreciate the full progress and anticipation future triumphs.

- - - - - - -

The Disability Journey

A Bridge from Awareness to Action

John W. Wilde, Ph.D.

The Disability Journey addresses a subject that is at once timely and timeless, since disabilities will always be with us. Inevitably, disability awareness will become increasingly important to our society with each passing year.

An insightful disability resource, The Disability Journey offers the wisdom, insights, and guidance to make your crossing the bridge from awareness to action a reality.

Dr. John Wilde is a counselor and professor, and founder of EDU-QUEST, a consulting company that provides disability trainings for government agencies and businesses throughout the United States.

http://www.iuniverse.com/bookstore/book_detail.asp?isbn=0-595-29870-2

HISTORY OF THE DISABILITY RIGHTS MOVEMENT

Smithsonian Institute's History of Disability Rights Movement.
http://www.americanhistory.si.edu/disabilityrights/welcome.html

Disability History Museum
http://www.disabilitymuseum.org

Disability Social History Project
http://www.disabilityhistory.org

History and anniversary info about Section 504 or the Rehabilitation act of 1973
http://search1.npr.org/opt/collections/torched/wesu/data_wesu/seg_142484.htm

Submitted Testimony on MiCASSA

2004-04-08T13:03:00.000-05:00

To let anyone interested know, I've submitted testimony to the April 7 hearing of the Finance Committe in the Senate re: MiCASSA and the Money Follows the Person legislation. There is a link posted in the sidebar to a copy of this. It is written on behalf of my son, as an advocate parent point of view.

Any Iowa members of ADAPT or NOD or other disability rights groups? Would love to have you comment and write to me at the link to my email.

MiCASSA and Money Follow the Person

2004-04-03T10:47:00.000-06:00

http://www.jfanow.org/cgi/getli.pl?1981

From ADAPT

These are the key points of the article linked above. They are the most important changes that must be made for my son to have an appropriate place to live AND to live a real adult life!

THREE IMPORTANT GOALS urgently needed

-- to remove -institutional bias from the Medicaid long term care program.

MiCASSA (S.971, H.R. 2032)

---Money Follows the Person Act (MFPA, S.1394)

---move funding from nursing homes into community services so more people can be served in the community without having to wait for legislative changes

These are the barriers to having my son served in an appropriate environment, in the least restrictive setting. Without change, my son is forced to live in a nursing home-like facility restricting visitation and paralyzing his social security funds to reimburse that facilty with only $65 a month left for his own personal expenses. The facility limits personal possessions to that which one would be able to have in a hospital room. Banned are his games, puzzles, toys, craft supplies, and computer. He can only leave the place to visit me or his family about two days a month. If he takes a vacation to see his brother in Arizona he would only have a 20 days left per year to visit me on weekends, even though I am only 30 miles away. Say he came to visit me for Thanksgiving and Christmas - this now leaves only 1 day or so a month he can come see me. His morning medications total 11 pills, but the agency will only give medications two times a day. Instead of all his life having taken part of these pills at wake-up and the rest with breakfast to lessen the wallop, he must take the hit all at once because it is convenient for the agency. He must not leave the facility after work from 3:00 to 5:00pm because that is the rule. If he needs to do some shopping or banking, it therefore cannot be on a work day and this limits him when activities are conducted in a business that has a 9 to 5 work day. He can make or receive calls for only 10 minutes at a time because all 15 residents and staff have only one phone. These are just the tip of the prison-like changes he and his family are now forced to accept in order for him to have supported living.

What is the institutional bias? There is only one facility for care in this county that receives government funding. State and county funding will only be given to agencies like the one that he is in. There are no alternative care settings or supports. If he lives in my home or in an apartment in my community, he and I, his guardian/conservator/payee and mother will receive no funding to help pay for his food, shelter, maintenance, and staff to assist. Even though he could live and work in my community, I would not be able to pay for a place for him to live or staff to cover supervision when I am not available. If he lived in my home, I would not be able to work. I would have no relief: no money to pay for someone to come in to cover care if I were ill or out for a night.

What is "Money Following the Person"? I live alone in Iowa, but we'd like to move he and I to another state to live near my oldest son and his family. If we move my son to Arizona from Iowa, he will receive no funding at all for 3 months until he can then apply for Medicaid and Medicare in that state. Then, he would have an evaluation there to see IF Arizona would pay for his care and medications. If accepted, he would then go on a waiting list to receive funding. And, that funding may not pay for many living expenses, medications, and medical treatment that he requires, for that varies from state to state. Arizona notoriously pays little. He could be on a waiting list for years, with no money towards medical treatment and medication until he is accepted.

My son is only 24. He is not retarded. His abilities and interests are that of most young adults. He has a severe seizure disorder and thus needs supervision by staff who can assist in times he would need transport to an ER. He has severe ADD and poor impulse control, with very poor short term memory. He cannot be expected to remember to give himself his meds and to prepare himself daily for work, or go to bed at a reasonable time. He needs assistance in preparing food, doing laundry, housecleaning and the routines of dressing and needs of hygiene. A great deal of his needs for support are not because he is retarded or physically-incapable: his short term memory for following directions is preventing him from being more independent.

What a terrible choice or dilemna: live in a more independent setting or choose the "prison" or "nursing home". At 24, condemned to that type of facility for the rest of his life? Dating? I don't think so in the facility. Recreational and leisure activities? Only as provided by the facility, with the disabled population and no mixing with "normals". Work? Only where the facility has contracts. Income? Controlled by the facility. Ability to save money to make a transition to another place to live? Limited to $65 a month if he saves ALL of his "personal needs allowance". How can this be "America" with life, liberty and the pursuit of happiness? He is condemned by bureaucracy and funding to living where the government will pay. And there are no alternatives allowed by the government, nor alternative settings that can apply to receive essential funding to make other options available to people like him.

Please look into the links supplied: it is really a matter of life for those involved. Adults with dependent care needs, whether eldercare or disability care, are STILL in "institutions" though called agencies and facilities.

URGENT Request for Advocacy Action

2004-04-01T19:41:00.000-06:00

I have just found this article posted on the website for the National Organization on Disability. Please read the snip below and consider contacting your area legislative representatives. Ironically, the home of this webauthor is within the state represented by Charles Grassley!

ADAPT Activists Converge on Washington to Support MiCASSA and MPFA

http://www.jfanow.org/cgi/getli.pl?1981
Date: March 25, 2004
From March 20 to 25, 2004, 500 ADAPT activists from 30 states converged on Washington in support of the Medicaid Home and Community-Based Services and Supports Act (MiCASSA) and the Money Follows the Person Act (MFPA). Both bills, which are currently stalled in the Senate Finance Committee, would allow older persons and persons with disabilities the option to receive care in their homes, rather than in an institutional setting. In the climax to ADAPT's action, 400 ADAPT members occupied the Senate Finance Committee room and hallway, refusing to leave until Committee Chair Charles Grassley agreed to a hearing on MiCASSA and MFPA. Despite numerous arrests, a hearing was finally agreed upon, and will take place on April 7."

Still Can't Believe

2004-04-01T19:09:00.000-06:00

...that it is so hard to find sites that are indexed in the major search engines on the issues of dependent care for adults. We can find many sites for eldercare, and it may be that way because there IS government legislation and Older Americans legislation that provides for needs of "older" citizens. But what about the needs of adults who must live in supported living environments that are much younger? In the disability rights field, there are many separate but relatively unorganized groups and websites, primarily dealing with the adults themselves, not their families. This website seeks to find any and all resources that may be helpful to these adults AND their families.

There are guardians, conservators, and payees for adults in dependent care who need help and information to best advocate for their family members and friends. As long as these friends and family members are relatively isolated from others with similar needs, there is little hope for progress in obtaining and providing good living environments for adults with disabilities.

This ED Forum is looking for a few good men and women to join together to first find support resources, and next to advocate together for positive solutions to the dilemna of obtaining appropriate care in the least restrictive settings.

In many areas, there are very few if any agencies that provide dependent living care. In the state of Iowa, for example, many counties have only ONE agency that provides supported living environments, if any at all. In such a climate where the need for placements is increasing, the few agencies there are run their programs with little or no oversite and competition. Without alternatives, monopolies and agency fiefdoms develop and since they are the "only game in town" one must "like it or lump it" as to the routines and rules imposed by such agencies.

Definition of a "good" client:

One who signs away all financial control to the agency and easily adapts to the routines and policies convenient to the agency. Preferably there are no "troublesome" guardians who are family members, and certainly no conservators who ask questions.

Definition of a "bad" client:

A client who is not retarded and wishes to live in the least restrictive setting possible. One who wishes to maintain or develop relationships outside of the agency setting. One who has strong advocates who help them to achieve more independence than the agency is comfortable with. Those who require an agency to "be out of their comfort zone".

Does any of this sound familiar to you? If so, please contact this webmaster at the email address provided in the sidebar. And use the comment feature to add your notes. We will be looking for you! Thanks for visiting today.

Reach Out Magazine Blog Links

2004-03-31T21:58:00.000-06:00

These are copied from the many links in the Reach Out Magazine website. They are stored within this post at present until they can be added to the Blogrolling links in the column on the sidebar.

Title: CajunHearts Home Page - Life with a disABILITY

Description: Kim is a special friend of Reach Out. Please be sure to check out here home page. She has a lot of great information on ataxia with lots of really useful links. Her site also has lots of great graphics as well.
URL: http://cajunheart.tripod.com

Title: Clarified

Description: Need a laugh? At www.enovel.com you can purchase My Walker and Other Glamorous Accessories by Claire Theriot Mestepey is a collection of short short stories. The stories feature a disabled woman and her unorthodox, politically incorrect views of the world. If money makes the world spin round, humor makes the dizziness enjoyable. This Ally McBeal-like heroine,may warm your insides,you know like heartburn. If you‚re looking for an inspirational tale of how disability triumphs evil,I‚ll be happy to recommend a few other books. My Walker and Other Glamorous Accessories has no intention of changing the world, it's just a written confessional that besides being inspirational, the handicap heroine is just as neurotic and insane as the next guy. For examples of her writing, please visit the site.
URL: http://www.clarified.net

Title: COPD

Description: COPD - 30 million people in the United States have Chronic Obstructive Pulmonary Disease, only 50% are diagnosed. Chronic obstructive pulmonary disease, is now the fourth leading cause of death in the USA, costing the US $23.9 billion or more per year.
URL: http://copd.20m.com

Title: DisAbility Resource Site

Description: Welcome to the Brejcha Personal and disABILITY Resource Site
URL: http://www.netreach.net/~abrejcha

Title: Homepage of Kari Ann Owen

Description: IN THE NAME AND SPIRIT OF LOVE.
URL: http://www.reachoutmag.com/cgi-bin/index.pl?url=http://pwp.value.net/penomee/penomee.html

Title: MS And More 4 U

Description: I have Multiple Sclerosis & live in Maryland. I was born in Louisiana. My site has info on MS and sites for people with disabilities. I also added some for fun. Laughter is our best medicine!
URL: http://www.geocities.com/msandmore4u/msandmore4u.html

Title: Rick Ashton''s Home Page

Description: I have OPCA/SCA3, see my site for more info.
URL: http://www.reachoutmag.com/cgi-bin/index.pl?url=http://www.angelfire.com/ma/rick99/index.html

Dang, Got to Find Way to Code Non-Bold text

2004-03-31T20:19:00.000-06:00

Sorry for the look of the text in posts. At present I have not located the proper html code to make sure that the post itself (not the title of the post) will appear in plain text. So, it is presently set to post in a sans-serif typeface so that it is easier to read for those with visual accessibility needs. Apparently there is a way to include headings in the template such as h1, h2, and the like but the supplied template from Blogger does not include these codes. And the Help/Knowledge Base articles merely suggest one learns more about coding from an off-site resource. Back to "school" for cobalt, webmaster of the ED Forum. Oh yes, there will be an actual posting forum included within the site as a link. Till then, use the "comments" feature to say "hey" to us. Thanks for visiting today!

US Dept of Ed Actually Does the Right Thing

2004-03-31T20:03:00.000-06:00

Read this surprising change to the No Child Left Behind provisions! Although I personally wish for the departure of Rod Paige as head of the Dept of Education, I did find this release from December of 003. Read the snip below for the basics and go to the URL for the complete story.Underlined are this parent and teacher's own highlights within the story.

"New No Child Left Behind Provision Gives Schools Increased Flexibility While Ensuring All Children Count, Including Those With Disabilities

U.S. Secretary of Education Rod Paige today announced a new provision of the No Child Left Behind education reform law that will give local school districts greater flexibility in meeting the act's requirements for students with disabilities. The secretary made the announcement at a press conference with Special Olympics founder Eunice Shriver, House Education and Workforce Committee Chairman John Boehner and students with disabilities, their parents, relatives and teachers.

Under final rules to be published in today's Federal Register, states, school districts and schools will have the flexibility to count the 'proficient' scores of students with the most significant cognitive disabilities who take assessments based on alternate achievement standards. Without this flexibility, those scores would have to be measured against grade-level standards and considered 'not proficient' when states measure adequate yearly progress (AYP). The number of those proficient scores may not exceed 1 percent of all students in the grades tested (about 9 percent of students with disabilities).

In other words, those students will be assessed by their achievement of standards deemed appropriate for their intellectual development, thus allowing states to more accurately gauge their progress. All students--including students with disabilities--deserve teachers who believe in their potential and who will encourage them to make progress, just as all parents and teachers ought to have the assessment information they need to target their efforts and provide all students a high-quality education.

Nationally, about 9 percent of the total student population is served in special education, of which about 9 percent have the most significant cognitive disabilities.

'The No Child Left Behind Act is designed to ensure that all children receive a quality education in this country--and that means every single child, including those with disabilities,' said U.S. Secretary of Education Rod Paige. 'This provision strengthens two key promises of the law: accountability and flexibility. It rightly protects all parents' ability to receive information about their child's progress in school, while providing new flexibility for schools and districts in accounting for the progress made by all students, including those with the most significant cognitive disabilities."

OK Now for the Links

2004-03-31T14:17:00.000-06:00

Here we go, off and away! In the meantime, enjoy this image from our link to sharemation.

Gas Prices Going Up?

Again a Trial

2004-03-31T14:11:00.000-06:00

Ok, trying now for the Description and Link additions. In the meantime, visit http://resourcefull.antville.org or http://firedup.blogspot.com for entertainment.

Collecting the Details

2004-03-31T13:56:00.000-06:00

This will take a bit of time, but daily will increase in links and commentary.

2004-03-31T13:43:00.000-06:00

Collecting links and setting the template now. Volunteer commentators and contributors are welcome here. Contact webmaster cobalt.

2004-03-31T13:21:00.000-06:00

Trial post to the ED Forum