ARC/DDC videos

You are strongly encouraged to visit this website: http://olympiainsider.org/. Cut and paste this URL or click on the link in the left hand list. You will see a list of pictures representing podcast videos, below which are links that you can click to play or download. You can read instructions at the top.

What you will find is a series of surprisingly well done, very political videos, shot on the Washington State Capitol Campus in Olympia, many featuring public officials such as Victor Moore, Director of the Office of Financial Management, along with Sue Elliott of ARC and Ed Holen of the DDC and others. Each is about 4 minutes long and many promote the closure of residential habilitation centers. They were produced as a joint project by the Developmental Disabilities Council (DDC) and ARC of Washington. I do not know if any tax money is used by ARC (of 501c3 status) to fund this project, but, as I understand it, the DDC is a state agency funded by Federal grant which matches State funding, which means tax money is certainly funding their participation.

The use of Federal or State tax money for these purposes is of grave concern to those of us whose loved ones depend on RHCs for their safety and wellbeing. Shouldn't public money, both contributed by the government & retained by virtue of exemption from taxation, be used for the benefit of all of the people with dd instead of just those who fit the bias of the groups receiving it?

I will be interested to hear/see your reactions.
Saskia

For Late Talkers

This interactive book just came to my attention. I haven't seen it, personally, but it sounds wonderful for late talkers. THE BIG BOOK OF EXCLAMATIONS. Here is the URL: http://linkme4ever.com/watches/?p=2054 .

Please, if you buy and use it, come back to us with your review.
Saskia

ALWAYS MORE TO LEARN

It is easy for us to be experts on the type of developmental disabilities our loved ones, wards, clients, and neighbors have. Toward more mutual understanding & empathy and a deeper sense of community, we will be adding reading, movies & possibly even art & music.

Here are a few resources related to autism.

Temple Grandin
Dr. Temple Grandin is a remarkable woman with autism who teaches at a University and has made significant contributions to society with inventions & techniques for improving the lives of animals, among which are some which take the terror out of slaughter for farm animals.

She is very articulate about her own process and on the subject of autism in general. She has several books which can be sampled on her website. http://www.grandin.com/ ; then click on books and videos. From there you can sample her books. Also, be on the look-out for the story of her life when it returns on HBO.

Horse Boy by Rupert Issacson. Rupert Issacson tells the story of his own son's emergence from the confining entrapments of autism and how it came to be. It is a remarkable story, told well. Although real, it reads like an adventure story. It is also available on CD. This is quite an unusual remedy and expands the world of possibilities when considering treatments, management, and healing of autism.

Warrior Mothers: by Jenny McCarthy. Tells the stories of several parents and their children with autism, their struggles and some of their successes in reversing symptoms through non-standard therapies. It is unclear why the title refers to Warrior Mothers, since one of the parents instrumental in his son's recovery is a father. For people not, yet, familiar with treatments such as chelation for heavy metal poisoning (mercury and others) and diets such as the "specific carbohydrate diet," it is a good introduction.

Son-Rise: by Barry Kauffman. A father's story of his son, finding what worked, learning the meaning of unconditional love and acceptance without expectation. His son did so well with the constancy and quality of attention he taught them he needed, the family began teaching a model of unconditional acceptance that they developed. It is called the Options Process, and it, also, is described in a book by that name. These books are pretty old, so I went on line to see if they were still around. What I found was that they have given rise to: Autism Treatment Center of America: The Son-Rise Program.www.autismtreatmentcenter.org/.

Are you familiar with any of the above? If so, how did you find they affected you? Do you have some to share? Remember, they don't need to be on the subject of autism. This was just to get us started. Lets build this library together.
Saskia

Prosecutor’s employee delivers with speed

Here is a heartwarming, "community" oriented, success story. It is reprinted from The Journal on line:

By Lauren Pack, Staff Writer 10:38 PM Sunday, February 28, 2010
HAMILTON — Elizabeth Crehan loves sports. Known as Liz or Lizzy to most, she excels in softball and is looking forward to playing shortstop this spring. But perhaps she should have considered track, because the 39-year-old laps everyone daily in her deliveries for the prosecutor’s office.
Crehan, daughter of retired Butler County Judge Matthew Crehan and sister of attorney Ken Crehan, showed off a trusty pair of black Reebok sneakers when asked what makes her so swift.
Her deep brown eyes are focused as she darts from office to office with mail, files and legal paperwork that has to get to the right place — now.
A no-nonsense haircut and serviceable outfits are the right fit for a full day of work, but make no mistake — there is nothing ordinary about Crehan’s work ethic or smile. She knows everyone in the Government Services Center and always takes time to say “hi” and catch up on the latest scuttlebutt.
“She makes us smile,” said Marcia Holstein. prosecutor’s office receptionist.
Crehan, a Hamilton High School graduate with development disabilities, has held the position for 18 years. She has no plans of making any changes.
“I like what I do,” Crehan said. “I would miss my friends too much,’
Her father laughed and said, “they have to make her take a vacation.”
Despite her challenges, Crehan has a memory for numbers, which makes an often-painstaking job a breeze for her. She pulls scores of case files for the seven common pleas court dockets.
“She can pull 70 lickity split,” Holstein said. “It’s amazing how she remembers the cases by their case numbers.”
When not on the run, Crehan operates the shredder, destroying paperwork. Sometimes it takes hours.
“It’s my job,” Crehan said, shrugging at the notion that it is a tedious job.
The ‘can-do person’
When Crehan’s father, Matthew, got involved in politics in his election bid for Butler County common pleas judge, it wasn’t his late wife Sheila’s cup of tea. So he called upon his daughter as his escort.
“She got to know all the politicians,” the retired judge said with a laugh.
Her time on the event circuit also helped land Elizabeth a job in the prosecutor’s office. It’s a job she has relished for nearly two decades.
At the age of 20, the Big Blue alum was offered a job as a “runner” by then-Butler County Prosecutor John Holcomb. Eighteen years later she is still running.
Fellow employees and hundreds of others in the Butler County Government Services Center who consider her a friend say she is rarely in a bad mood or absent from work.
The 39-year-old marks her rounds daily, moving swiftly and easily to county departments making deliveries. Then she settles back to the office on the 11th floor for filing and document shredding duties.
Her description of daily duties:
“I come in, take my jacket off, leave my pop on the table, sign in, go to the clerk’s office to get things stamped, drop off stuff to offices, take the mail to judges’ mailboxes, bring mail up, go to auditor’s office for Susan and Melissa,” Crehan said. “That’s it.”
She also tries to squeeze in some document shredding and filing time.
Around the office, Crehan is known as the “can-do person.”
“You will often hear her name on the intercom,” said Prosecutor Robin Piper, “because we need to get something somewhere fast.”
Piper said Crehan is the personal pipeline for his office to other county offices. He described her as efficient and focused.
When Crehan isn’t working, she is at sporting events, movies, dances or out to dinner. She loves vampire movies and Mexican food best. Many of the events and outings are coordinated by the Butler County Board of Developmental Disabilities.
“She has more of a social life that I do,” said Matthew Crehan.
Elizabeth was adopted as a baby. Despite countless trips to hospitals, her developmental challenges were never fully diagnosed, her father said. He said he now believes she has a form of autism.
It was important to Matthew and Sheila Crehan that their youngest child be as self-sufficient as possible. And today she is.
Hidden talents
Crehan lives in West Hamilton with her cat, Gabe. She shops with her father for groceries, but cooks for herself and sometimes bakes treats for co-workers.
“She always looks on the bright side. Maybe more of us should try that,” Matthew Crehan said.
Sandy Fowler, a county court administrative assistant, drives Crehan to and from work most days. Fowler has sisters with developmental disabilities and also considers Crehan her sister.
“She is off the charts,” Fowler said about Crehan’s independence and work ethic. Fowler also noted another of Crehan’s hidden talents — singing.
“She loves to sing with the radio — loud,” Fowler said with a laugh.
Matt Reed, Crehan’s softball coach in the county’s therapeutic recreation league for the disabled, said you can set your watch by Elizabeth. She eats lunch nearly daily with Reed, who is staff attorney/magistrate for Butler County Judge Keith Spaeth. Many days Spaeth also joins them.
“She is always here on the dot for lunch, but she also knows when it is time to go back to work,” Reed said.
One day Reed said he told Crehan she was infamous around the courthouse.
She smiled and said, “No. I’m just popular.”

more on SB6182

Understanding that it is never over until the budget is signed by the Governor, if all goes well, SB-6182, the bill that would have removed RHCs from state statute, has died. As of 5:45, with cut-off at 6:00, it had not passed out of the Rules Committee, and Committee Chair Brad Owens' Aide did not consider it probable that it would at such a late hour.

How this would affect the budget proviso that would fund closure of FHMC is a question mark. In theory it should prevent it but those of us who depend on RHC services and those who want to be able to, some day, will have to stay vigilant right up to the end.
Saskia

Pitting People With DD Against Each Other

SB 6182, should it become law, would remove RHCs from State statute. It would clear one obstacle from the path of closing the RHCs. Yesterday, in the morning it was added to the Sen. Ways & Means schedule and then passed on to the Rules Committee without having had a public hearing. Last year, it was tabled for lack of sufficient time for testimony in it's hearing! Why would public testimony have been avoided this year?

Those perpetuating the closure battle surely must know that RHCs actually set the basis for community funding; and closing them very likely would result in less, not more, available community funding for those who are currently wait listed ! So, whose interests could the closure push really be meant to serve? Who stands to gain, especially financially?

Pitting people with developmental disabilities against each other is wrong. Period. Each person is important!. Why not give up the attack strategy so we can work toward understanding and mutual support? Why not, in deed?

Saskia

FIX COMMUNITY QA

The House budget doesn't close Frances Haddon Morgan Center; The Senate budget would close it .

FHMC families are frightened at the possibility. One of their many reasons is inadequate "quality assurance" in the "community." Inadequate, that is, to protect cognitively impaired children or adults with severe developmental disabilites.

This is not to say that all “community” venues are bad, only that the QA system that should assure that they are good is ineffective. In an RHC, if there is a problem, someone sees it and it gets corrected. Standards are high. Enforcement is strict.

Not so in the "community." Neglect, abuse and mistakes can go on for months, even years without anyone noticing or fixing them. Audits are infrequent, inadequate and scheduled. Even State Operated Living Arrangement ( SOLA) workers report this; and some state auditors describe their reports & recommendations have been rewritten by their supervisors.

"Community" supervision of workers can be inadequate or non-existent. Caregivers are too often undertrained. Medications with critical side effects can be administered by workers with no pharmacology background. Supervision from off-site is considered sufficient for non-nursing home venues. This puts the resident at risk. Nurses working on-site would not be allowed to delegate to non-professional staff the responsibility for administering medications. That medication administration by non-pharmaceutically trained personnel is cheaper is not a reason to allow it for people with dd. Cost effectiveness should never pre-empt safety.

EXAMPLES OF PROBLEMS
A child of 9, paralyzed, at risk for aspiration, was left by the nurse in his mother's care. The nurse returned a little while later, having forgotten something. She found the mother had driven away, leaving the child alone in the house. When she reported it, the nurse was told that nothing could be done unless there were other offenses. Others were known, but none were on record.

An adult male, developmentally disabled, cognitively arrested at an early age (mentally retarded) was wheelchair-bound. Having been been moved to shared housing from an RHC several weeks before, he was falling asleep with his face in his food. On questioning, his roommate said this had been happening ever since he had moved in. When called upon by the roommate to attend to the sleeping man, the caregiver only sat him up and instructed him to eat, then left him alone. This was observed three times before the caregiver took the man away from the table. Next to the table, there was an open door leading to a stairway, where, if the sleepy man had been awake enough, he could have fallen down the stairs in his wheelchair. The man's behavior suggested that there was a medication adjustment needed or that the man might be having unrecognized seizures. DSHS was expected to return in about 6 weeks for a routine evaluation of the new living situation. Evidently, the caregiver did not associate the sleeping behavior with anything to be concerned about, as he had not reported it.

One mom tells of her son's hand having been deeply cut while he was dumpster diving for food, an activity that was approved by the person in charge of him at the group home where he was living. As she tells the story, the house would run out of food because the cognitively arrested residents, would spend all of their allowance the first day the money came in, eat all of the food, and, then, because there was no more food, the dumpster diving would become necessary.

Of course, she had her son moved, but what about the other residents? What if they had less attentive parents or their parents could not monitor them, or they were deceased?

One wheelchair-bound resident had been moved from an RHC to a house in which he could not access the bathroom because his wheelchair would not fit through the unmodified bathroom doorway. This was described by a visitor to the house.

Reported by former RHC resident families: after more than a year, day programs and activities promised at the time of moving from the RHC had not been made available for several; and for others, they had been withdrawn after the funding to the house had proved insufficient.

A young man with more or less high level mental retardation was speech impaired. He had no guardian or family. After weeks of missing him where he worked, the organization that employed him found him in jail. Since he had no ID on him, no one had been notified. The people who knew him were not allowed to have him released into their custody. They wound up arranging for a guardian ad-lidum in order to effect his release.

An RHC resident with a feeding tube and a history of aspiration pneumonia had been moved by DSHS to an adult family home. The RHC 's orientation for the caregivers and the instructions which accompanied the woman were very specific about the frequency with which she needed to be fed and the small quantities which were required in order to prevent aspiration. Apparently not having sufficient staff to observe the prescribed routine, the staff increased the quantities and decreased the number of feedings. The patient died, having aspirated regurgitated formula. As told by RHC staff loved her.

A big, young man who had been set up in an apartment with people assigned to watch over him looked normal, but was cognitively arrested and did not understand that it was not OK to take things that he found in stores or other peoples' homes. Those responsible for him reinforced his belief that it was OK by simply paying for whatever he had heisted. Finally, one time, the police were called. He became scared and upset, lost control. He was tazed by frightened policemen

Who can blame FHMC families for being frightened?

Our public servants should be held accountable for assuring that mentally retarded residents living in "community" homes are safe and well provided for. But the DSHS "community" system of QA is not set up to protect the individuals for whom it is responsible.

What about this situation? Should we be sending more people into poorly regulated environment? What can we do? What should be done? If you could design a system of QA, what would be the elements of it?
You are powerful.
Together we can be awesome!
Saskia