Among those of us who care deeply for and about people with developmental disabilities, I hope to hear emerge a new voice, ours, rising together for the benefit of all, harmonizing with reason, respect and hope, and transcending divisions, giving birth to a new era of creative cooperation.

Toward this potential, DD EXCHANGE is for conversation, civil sounding off, sharing of stories, experience, information, resources, and inspiration, giving and receiving support, and creative problem solving.

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Sunday, February 28, 2010


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.

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!