California: Parent testimonial (2007)
Jan 01 07
To: Ms Clea Benson-Bee Capitol Bureau
From: Dale Emde, Pacifica, California
As a parent of my severely handicapped son Arthur, who has lived successfully at Sonoma Developmental Center since 1964, I believe I am qualified to comment on the completely avoidable death of Donald Santiago after being forced to move from Agnews DC into the community against strong protests from family and friends.
The public does not know the complete story of our California health system.
There are three powerful forces at work, determined to force our most fragile citizens into homes in the community and all under the false banners of “freedom” and “choice”.
The first and most obsessed with this crusade is Protection and Advocacy Inc (PAI).
First created by Senator Jacob Javits, NY, 1975 to advocate for the developmentally disabled due to abuses occurring in New York. PAI opened in California, 1978, adding other areas to police in 1986, ‘92 and ‘98. It now stands as a colossus checking on the entire United States’ developmentally disabled. Their tentacles are everywhere in the health industry. I suggest you go to the net and see the number of lawsuits they have filed and the numbers pending. We should never forget that PAI is totally paid for by our taxes. They spend tens of thousands of dollars to win their judgments which cannot be matched by DC parents.
I could not believe the completely inane statement by Ellen Goldblatt (PAI) about Donald Santiago, “It’s tragic that he then died. It’s also nice that he got to move after so many years of living in an institution” Can I really believe she said that? My son has lived in a wonderful environment at Sonoma DC for 42 years and would have been dead many years ago had PAI happened to target him.
The second powerful force is the California Department of Developmental Services. This department is the boss of the 7 development centers and 21 regional centers. The DCs have well-developed medical, dental, behavioral and respite care. Well-developed because DDS and the Federal government check on them constantly to make sure they’re up to snuff. You can bet if the DCs were not getting excellent ratings, PAI would have an excellent chance to close them quickly. DDS is a pawn to PAI. Whatever PAI wants, it gets. It has a staff of 220 lawyers who love to litigate. Their obsession is doing away with all congregate care which in itself is lunacy. Very fragile clients benefit from the close medical attention to their frailties and the professional health care available in DCs.
The most egregious thing to me is; when the RCs were created to handle the large numbers of clients in the community reducing the pressure on the DCs because of overcrowding and understaffing, all communication stopped between the two entities and the reductions continued. Someone in authority should have said, “Let’s use the DC’s excellent health care for all of the disabled in the surrounding areas“. In one stroke the health care for all clients would have been improved immediately. Hundreds of lives could have been extended.
As it is now and has been all these years, any medical emergency in the community is handled by 911. The client is taken to the hospital (sometimes jail) where no one is trained to care for the client properly.
The third powerful force is the California Executive. Unfortunately, Governors listen to their staff and departments, paying little attention to the complaints of the citizens who elect them. And of course PAI is constantly pushing to close the DCs. If they don’t like what’s happening, they sue. Everything comes back to PAI.
My wish for the New Year is that the ongoing rush to close the DCs, which have the best health care available, be stopped and re-evaluated by the agencies involved with full input from parents and families. We have the ingredients; our leaders must have the will.
