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| Agnews Developmental Center |
Concerns are often raised over the care available to clients at regional centers and other community-based homes as compared to the services received at developmental centers. Part of our role is to assist families in finding the most appropriate placement for their developmentally disabled family members and to advocate for the developmentally disabled, and so we often publish these concerns and the problems some members have experienced in the Gazette and on this blog.
Joanie's concern is that the instances when the system outside developmental centers does work for people has not been well represented and she has a very good experience to report with her son Brucie, which she relates in her letter. The letter was addressed to PHA President Steve Doherty. You can read it in its entirety below. Watch the Gazette and this blog for further comment and follow-up.
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Dear Mr. Doherty,
I receive the Eldridge Gazette and I was very disturbed by much of what was written in the latest edition regarding the closure of Agnews. It is very unfair to spread misinformation to the families of the Sonoma residents. It only serves to create tremendous worry and fear when quite the opposite is the truth.
My name is Joanie Pepper and my son Brucie was a resident of Agnews for over 30 years. Ever since Oct. of 2007 Brucie has been residing in a beautiful 962 home in the city of Morgan Hill less than a half hour drive from our house. I was able to decorate his new home with the things that I know have special meaning to him. My entire family is delighted with the wonderful life that Brucie is leading. He receives excellent medical care, takes part in dozens of trips out into the community every month, enjoys delicious home cooked meals and is cared for by staff that is very loving and dedicated. I feel as if they are part of my family. About 50% of the staff are former Agnews employees and the other 50% come from the community.
There are weekly visits from a dietitian, an occupational, physical, and recreational therapist. His housemates were on his unit at Agnews and are therefore familiar faces. The staff is able to give Brucie and the other residents a great deal of one on one attention. The transition into these new homes was very well thought out. And, most importantly, Brucie is very happy and has truly blossomed in this nurturing environment. The change in his life is miraculous and I realize now that had I known what his life would be like, I would have been welcoming the change.
Hopefully, all the lessons learned will be utilized in any future closures of a Developmental Center. This experience has taught me that sometimes when we fear change, that change can surprise you by creating a situation that is better than you had ever imagined.
When Agnews was slated for closure there was no parent more concerned than I about what the future had in store for my son. I thought that a home in the community was not ever going to be able to offer him the care he had at Agnews. Through the efforts of Agnews parents, siblings and other advocates, major bills were passed that resulted in the creation of homes that had never existed before. We now have the 962 homes for the medically fragile, the SRH homes for the behaviorally challenged, Family Teaching Models , AB 2100 to establish houses that would be the clients homes in perpetuity and AB 1378 providing state employees the ability to work in these residences and maintain their state salaries and benefits. In addition, there was a Quality Management System put into place by D.D.S. to oversee the care of our loved ones after they left Agnews and were situated in the community. And, very importantly, careful planning has gone into the transition of the medical and dental care. It is also interesting to note that the medically fragile folks are doing very well and have been able to go on field trips with great success.
There were several statements made in the Gazette that are not so. One example is, "The fear is that later these homes will not have licensed staff, but just be nice homes with granite counters." The legislation that was passed requires that the staff be licensed.
Another sentence states that, "No one who is moved out of the developmental center can come back to it for medical and dental care." In fact, there has been an Out Patient Clinic at Agnews for clients to attend. There are HMOs that have doctors in each community that care for our loved ones.
There was another statement that indicated that there should not be a speaker at your meeting who would say anything in favor of community placement. Why should the truth be hidden from the Sonoma families? We have seen first hand that community homes can be established that are truly wonderful and provide enriching lives for our children and siblings.
Another sentence stated that, "An inordinate number of people died just prior to or just after the closure of Agnews". In the history of any Developmental Center there are going to be deaths. Many of these folks are very fragile and some die due to old age. It is blatantly unfair and untrue to say that these poor souls passed away because Agnews was closing.
The Gazette states that a member of your parent group was depressed because there was one parent from CASH/PCR who had been against the closure of Lanterman, who now spoke in support of the closure. Isn't it possible that that parent had done some research and realized that perhaps a good home in the community was attainable?
Yet another statement reads, "The experiment to close developmental centers has not been working". Actually, the closure of Agnews has been working and working well. Yes, in the past years there were unsuccessful closures, but if the Agnews closure plan were to be implemented in future closures, there would be many more success stories. Believe me, I am not standing alone in my story. Every family I know is happy with the lives their children are now living. I hope that Sonoma will stay open for many years to come, but should it eventually close, the families should know that the future of their loved ones can be bright.
I realize that we have no crystal ball and cannot predict that a future closure of any DC would exactly duplicate that of Agnews. However, your newsletter had specific misinformation that was particular to the Agnews closure. I feel that it is important to make sure that that information is corrected.
I would be happy to give any Sonoma parent a tour of my son's home.
Thank you for your time.
Very Sincerely,
Joanie Pepper
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