Report on Challenges Facing Caregivers of Disabled Touches a Nerve
I want to thank you for your coverage of the developmentally disabled and their resources (or lack of them) in your articles, “Without a Net” and “The Great Divide” (Feb. 6 and 7). The issues are so complex, and you presented many of the issues in an objective light.
My husband and I have served the disabled of all ages and disabilities for over a combined 60-plus years, as teachers and administrators in public and private systems. We are “retired,” but I currently direct a small agency in Redondo Beach that offers day activities to adults with developmental disorders. There are no “standards” for many of the services, and even though there are directives for regional centers, their philosophies and how they operate vary from regional center to regional center.
Having been the sister of a disabled brother (now deceased), I have been able to view the “issues” of the disabled from both sides--as a family member as well as a professional. Fortunately, it has been my experience that the majority of the direct, grass-roots caregivers working in day programs are caring people, not in business to “get rich,” but to provide support for the disabled and some respite for the 24-hour care-giving parent. As I work with the adult disabled, I see the dilemma and guilt many parents feel about placing their son or daughter in another caregiver’s hands.
I am going to require my employees to read both of your articles. These articles can certainly build sensitivity and insight into the disabled dilemma and the parents’ point of view for any reader.
NANCY LANGDON
Via e-mail
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Thank you for the well-balanced article on the trials and tribulations of parents who choose to keep their disabled children (and adult children) at home. As you are well aware, only the most severe situations were covered. I understand the necessity of having a “catch the eye” theme. However, there is much more to be explored. For instance, the disparity in wages between direct care staff in the state development centers who start at $12 to $14 per hour versus direct care staff in the community who start in the $7 to $8 range is an ongoing scandal. In addition, state employees enjoy generous benefits including retirement. In the community almost no provider can even give more than minimal health insurance benefits.
ANN L. SNOWHOOK
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Thank you for reporting on a serious crisis in the developmental services delivery system. Gov. Davis has been in office for 13 months and has yet to appoint a director of development services. Presently, there is a bill in the Senate, SB 1332, that would increase the compensation of direct care staff by 20%; this increase covers only day programs and respite care, but it’s a beginning.
The Times should urge the governor to appoint a leader to the Department of Developmental Services, and to support living wages for all direct care workers.
DIANE ANAND
Via e-mail
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I have a 19-year-old severely disabled son who lives at home with his 17-year-old sister and us, his mother and father. We have been involved and active for many years with the L.A. Unified School District to create educational opportunities for the severely disabled in their neighborhood school. This has made an incredible difference in support for us and our son from our community.
After your piece on Sunday, I had many people approach me in a more sensitive way. Our son uses a wheelchair and a communication device to talk. We appreciate your educating the masses for us. It helps. It is very hard to be out in the community handling everyone’s grief about your situation on top of everything else. It’s much better when people are comfortable and you can just be who you are.
DIANE HILL
Via e-mail