Fw: Arc and Senate Rebalancing Resolution Passes Committee

[Guest guest]

This is very compelling testimony in favor of community living. It will make

you sick and then give you hope...

It makes me very grateful that our loved ones are living at a time when early

institutionalization is no longer encouraged.

Ellen

Ellen Garber Bronfeld

egskb@...

Arc and Senate Rebalancing Resolution Passes Committee

The Arc of Illinois

March 10, 2011

Leaders in The Arc:

Senate Joint Resolution 15 passed out of Senate Committee today unanimously! SJR

15 is another rebalancing effort showing the need to reform our disability

system.

What follows is the testimony of Hamann about her sisters, Margarets,

new life in the community. Powerful.

Tony auski

The Arc of Illinois

815-464-1832

SJR15 Hamanns Testimony

I am joined today with my good friend and co-worker Shirley .

My sister, Margaret Doering, went to live at Dixon State School when she was two

years old. It was 1945. She had been recently diagnosed as profoundly

developmentally disabled and was nonverbal. Our parents accepted the advice of

their doctors that she would need institutional care for the rest of her life

and that her presence at home might hinder the normal development of future

children. She was declared a ward of the state in court and escorted to Dixon by

a uniformed deputy sheriff and probation officer under a Warrant of Commitment.

Margarets first psychological assessment at Dixon, dated 6.1.45, says briefly,

Margaret pays no attention to her surroundings, just sucks her thumb. She is

untidy and has to be fed. She was classified as an imbecile. She exhibited a lot

of repetitive behavior twirling, rocking - that suggests autism, about which

very little was known at the time. She didnt seem to respond to her environment

or interact with other people. Her health actually worsened at Dixon. Doctors

told our parents that she was not expected to survive puberty. She was ill for

the first couple of years and spent most of that time in the infirmary in a

closed-in crib that amounted to a cage. She had all the usual childhood

illnesses of the time and many less common like bronchial pneumonia, whooping

cough, shigella flexneri, giardia lamblia, amoebic dysentery, hepatitis, anemia,

and pin worms. Medical notes mention boils, infected lymph nodes, bites and

scratches, as well as a few broken bones. In 1949 her broken left arm was the

subject of an investigation by the Assistant Deputy Director of the Medical and

Surgical Service. A response from the Superintendent of Dixon mentions our

critically overcrowded Nursery which now houses 121 patients (Public Health

Standards would allow for 47). She became a hepatitis carrier and eventually

developed a serious liver condition that needs monitoring.

Years of progress notes describe Margarets sleeplessness and constant motion. A

1968 report is typical, She rocks and hums continuously, and must be tied in

bed, otherwise she will not stay there. She was given phenobarbitol, sodium

amytal, stellazine, mellaril, thorazine, seconal, dalmane, vesprin, chloral

hydrate, phenergan, impipramine, and tofranil, among others, from a very young

age. She had difficulties with eating and toileting. One to one supervision at

mealtime, restraint with a sheet, mitts, a biting helmet, and being placed

behind the bench are some of the other behavioral restrictions mentioned in her

records.

Margaret was the firstborn child in our family and because our doctors

discouraged even the knowledge of our sister, we didnt meet until we were

adults. I became her guardian at the age of twenty-seven. She was thirty-seven.

One of my first tasks was to find her a new home, because Dixon was closing.

Howe seemed a logical choice and even an improvement for her. It was closer to

her family and she would live in a small kind of townhouse with only nine or ten

other women, yet still have the kind of supports I was convinced that she

needed. She definitely did better at Howe than at Dixon and was eventually able

to attend a community workshop.

Still, there were many disappointments. Margaret was often agitated and

restless, especially when after the long bus ride home from workshop. Residents

moved in and out of her home. She was moved around, sometimes without my

knowledge. Just the daily comings and goings of staff gave the house a bus

station atmosphere at times. There was often drama with housemates who were not

well suited to each other and had drastically different needs.

Margaret was often left out of activities because of staff availability or the

inappropriateness of the activity for her. Things she did enjoy walking outside,

for example rarely happened. Her clothes and possessions were frequently lost in

the shuffle. She enjoyed rocking in a chair but I was discouraged from

purchasing anything but a wooden chair that was easy to clean. These were

frequently broken. Small objects that she liked to hold disappeared so quickly

that I would commonly come to visit and find her playing with her shoes and

rubbing her hands on her face.

Over the years there were a couple of possible chances for her to move, but the

situations didnt seem to be an improvement facilities in office and industrial

parks that seemed even more institutional and isolated than what she already

had.

Even though I was often frustrated by the situation in her home I thought it was

the best we could do for her.

Then three years ago she moved to a CILA home run by Sertoma. She lives in a

neighborhood of family homes in Olympia Fields. All of the pieces I was

concerned about are in place for her safety, continuity of care, and

accountability, but her life has become infinitely richer and she has blossomed

beyond my hopes and dreams.

For the first time in her life Margaret has a friend. Margaret actually seeks

her out. They often sit together and sometimes they hold hands.

At Margarets first planning meeting they asked me if I had any ideas about what

she might like to do for fun. No one had ever asked that before. She isnt left

out now because if shes not interested in what her housemates are doing she does

something else that she wants to do. She mall walks, goes out to eat, shops, and

goes to the pet store where she particularly likes to watch the birds. She likes

being outside on the patio in the summer.

The atmosphere in the house is more like that of an ordinary family home.

Everyone is not required to spend every minute together, but there is a

comfortable living/dining area when they choose companionship. Meals are cooked

in the kitchen and Margaret enjoys watching the process.

Margaret has her own room with a comfortable padded rocking chair. Her closet is

full of clothes and her possessions stay where she puts them until she comes

back and picks them up again. This may seem small, but it is priceless to her.

Giving up institutional life meant giving up having medical staff always on the

premises, but Ive found that Margarets medical care is actually more proactive.

Margaret goes to the doctor, when she needs to, not according to a group

schedule. There is a nurse at Margarets workshop who has made house calls if she

had a concern. Margarets staff are sensitive to her ways of expressing herself

and can read when shes not feeling well. They observe changes in her condition

and respond to them quickly.

Transportation is not an issue. Theres a van for her house. She doesnt have to

wait for the okay from a transportation department if she wants to go somewhere.

Margaret attends a workshop during the week, but shes in a program thats geared

to seniors, like herself. Fun activities are available, but there are also

comfortable chairs when she wants to relax.

On the whole, Margaret is calmer and happier than Ive ever known her to be. The

agitation I so often observed as the norm for her is taken by the staff at her

new home as a sign of discomfort and is carefully observed and addressed. After

63 years of institutional living, Margaret finally has a home one where she is

known and valued and can experience friendship and affection. She has proven

that she can have a vibrant life better than I ever imagined.

Shirley and I are Family Advocates for the Arc of Illinois through the Lifespan

Grant. We talk to families about living options to families who have loved ones

in institutional settings.

Hamann

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