RE: [QUAD-L] Home help/health care - Gabe

[Joan Anglin]

Hi Lana

I agree with you on in home care, whether it's their own home or a SLA home. 35 years ago I started working for the State of Nevada in a "mental institution" on a ward for severe and profound MR's. There were 45 to 50 men, women and children all lumped together. Two years later they began smaller group homes, divided into 12 on a unit with 1 or 2 to a bedroom. Within a year we noticed major improvements in behavior, socialization and health.A year later the State funded developmental homes with families, no outside staff. My husband and I had anywhere from 2 to 4 living as part of our family, and even after my SCI continued to maintain "our guys". We divorced 9 years ago (darn chair) and now I still have 2 guys living with me. Yes I get paid-it's my work, but I'm proud to say one gentleman who came to live with me in 1980 and who tested 27 on his IQ is still with me. He works full time in a sheltered workshopand earns around $400 a month, takes care of his hyg! iene, has chores in the house, cleans 3 horse stalls, feeds the horses (has learned how to weigh feed), and is a contributing member of society. Oh yes-he's basically nonverbal.

I began a sheltered workshop and taught MR's that were deemed untrainable to work with horses and general gardening. It was slow but over 4 years 6 people were able to move into supervised jobs. We had to close because liability insurance rose to astronomical levels.

I feel that people not conversant with mental retardation or brain injury often do not understand how much is "cooking" behind the front appearance, leading to misconceptions about needs and wants.

Also, the other day I was riding home on our door to door citilift-marvelous program-when a grown man suddenly-stopped in front of me and said "me John, you John". I had last seen him 20 years ago. He had had a massive brain injury and was unable to talk, and I worked with him along with a speech therapist. One game we came up with was "me Joan, you John". He never conqured Joan so I was always John. Twenty years later he recognized me, even in a wheelchair!

Ok, I'll quit for now, sorry this was so wordy, but passion runs deep. Joan

Lana Baugh <[EMAIL PROTECTED]> wrote:

 

 

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From: Lana Baugh [mailto:[EMAIL PROTECTED]
Sent: Friday, August 19, 2005 7:10 PM
To: '[EMAIL PROTECTED]'
Subject: RE: [QUAD-L] Home help/health care - Gabe

 

John,

 

My son, Gabe has a birth defect, several, as a matter of fact. He also has a SCI. I do not get paid to manage his care. I do not support this, nor do I criticize it, since I have not walked in that parent’s shoes. I worked at a Protection and Advocacy Agency for 18 years and advocated for all individuals with disabilities to be respected and to reach their maximum potential, which includes living as independently as possible. As you know P&As are independent and do not answer to the state or feds in investigations. As a parent and a person who advocates for individuals with disabilities I am outraged at your statement. If you did not sit down and talk to my son Gabe you would think he wouldn’t know the difference between a nursing home and a pigeon coop. If you spoke to him you would know that he does. But that is really irrelevant. All people with disabilities are underestimated. Again, irrelevant. All individuals with disabilities regardless of the severity have the right to be respected, have the right be protected, reach their maximum potential, live as independently as possible and have a society that does not judge them or their rights to services based on disability. Just like many who think that individuals with a SCI might not have good hearing or maybe have other disabilities. This is the last place on earth I thought I would see this type of blatant discrimination.   

 

While I do not support parents being paid to manage their child’s care, I understand it. If you think nursing homes are pits, you haven’t visited many facilities that care for individuals with developmental disabilities. I used to investigate them. Our agency received all of the state and federal reports. Just investigate a few deaths or people being tied down or hitting their head on a wall because of boredom and lack of programs. Bored him to death, literally.

 

If the only way I could keep my son out of a home was to be paid to manage his care, I would. At least people who have a SCI can tell someone if they are being raped.

 

Been their, done it!! I expect better here.

 

Lana,

Gabe’s mom

 

PS. My husband and I are busting our asses to help individuals with SCI to have 24/7 in our state. Are you?

 

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From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]
Sent: Friday, August 19, 2005 5:17 PM
To: quad-list@eskimo.com
Subject: Re: [QUAD-L] Home help/health care - Gabe

 

I'm never surprised anymore. I know 2 brothers with birth defects that live in their own home and their father GETS PAID to manage their 24/7 help. These are guys that wouldn't know if they were in a nursing home or pigeon coop.

 

 

john

 

In a message dated 8/19/2005 3:48:42 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes:

Lana,   You've mentioned before that Gabe gets home help via a waiver (and maybe some other source as well?) 24/7.   I am shocked by that as probably many here on the list are.  That would be three 8-hr shifts, or by whichever arrangement, and I know of no one living at home qualifying for that much care.  The most I've heard of is, like, 8 hours a day - total.  Via Waivers or county help.   Is anyone else here also surprised at this amount of care that Gabe receives?   Lana ... what state are you in?  For 24/7 care ... is it ALL paid for or must you spend-down anything?   Or any other pertinent info would be most appreciated.   Thanks in advance,   Lori Michaelson C4/5 complete quad, 25 years post Tucson, AZ