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Archived
News and Projects CASHPCR Comments on 5 Year State Council Developmental Disabilities Plan
ECONOMIC FACTORS -- The increased cost of utilities has caused anxiety and concern among many people with developmental disabilities, as well as their families and support groups. Many community facilities will be forced to limit the hours per day or days per week that their programs are available to clients because their utility expenses have increased significantly. Of great concern are clients on fixed incomes. Paying for higher energy costs could mean reducing the money spent for food, recreation, transportation and clothing.
Of great concern are the medically fragile clients. Many nursing facilities are already in bankruptcy or on the verge of closing. Many others are understaffed. We believe the State must maintain Developmental Centers as safety nets for people who cannot obtain satisfactory services in the community. To this end, Developmental Center resources and services must become more, not less, accessible to the entire community of people with developmental disabilities.
It is not reasonable to believe that all people with developmental disabilities have a goal of home ownership. For those who dont, the many acres of Developmental Center land not being used now could be developed into affordable housing that could be rented. Or possibly the housing could be sold and the land leased from the State for a minimal amount. We do not believe any Developmental Center assets or land should be sold. The designs could be creative and appropriate to meet the needs of individual residents. The services, supports and security of the Developmental Center would enhance the well-being of the residents. The Developmental Centers are surrounded by communities. Public transportation is available to augment the transportation systems within the centers. Agnews has a trolley with a regular daily route. Lanterman has the LTD, a special tram on an hourly route with designated stops.
The State could develop a loan program with low interest and no down payment that would be available only to Californians with developmental disabilities. This would enhance the existing FHA programs. Perhaps the State Council could fund a grant to begin a pilot program. The loan could be a silent second that would disappear after a period of years. The program could mirror the first-time home buyer programs that many cities offer.
THE CRIMINAL JUSTICE SYSTEM -- The State has been sued for its failure to provide necessary services to the many state prison inmates with developmental disabilities. The closure of Camarillo Developmental Center was an obvious mistake, as many former Camarillo residents have ended up in jails.
Porterville Developmental Center should not be the only location to care for forensic clients. There is a great need for a similar facility in Southern California. We must be concerned about the victim who may have cognitive impairment as well as the accused person. Assessment and identification of an accused person is critical to the correct for treatment and services, which may include family counseling.
AGING OF CALIFORNIANS -- Many aging parents are acutely aware that their children with developmental disabilities may outlive them. Parents with children who have been residents of Developmental Centers are extremely fearful that, if they should no longer be able to advocate, their child will be immediately dumped into an inappropriate community facility either by the Regional Center or by the Superior Court
Our Developmental Centers have already expanded their residential programs to include Senior Centers and age-related services and supports, plus bereavement services. They should be enhanced to include Alzheimers care. The expansive lands could be used to build appropriate senior housing. The activities and resources should be developed as Senior Centers for aging persons with developmental disabilities on and off the DC campus. Because many group home residents are employed, it is very difficult for a retired person to live in such a home unless the program and staffing has been designed to suit the aging person. Community care facilities empty the homes of clients during the day, even if it is not in the clients best interest.
The system will face an influx of clients whose parents can no longer care for them at home. Community programs and residential facilities such as Sierra Vista and Canyon Springs could be developed as Senior Centers. Assisted living facilities for people with developmental disabilities could contract with community vendors for programs to expand senior services.
HEALTH CARE -- The availability of adequate health care services is probably the single most important reason for supporting Developmental Centers as Centers of Excellence. The community is sorely lacking in medical and dental services for people with developmental disabilities. To address this major deficiency, Developmental Centers must become accessible to medical and dental clients. Families must be made aware of the services they can obtain now, and we must expand those services and offer them to the communities, thereby helping more people and reducing the costs. Also, the many university-affiliated programs do not seem to train and develop medical and dental teams to serve this population. Our centers could be training facilities for doctors and dentists, with major incentives for interns intending to serve patients with developmental disabilities.
OVERWHELMING COMPLEXITY --The systems complexity is why the per-client cost of Regional Center clients in the community is so misleading and artificially low. Government services used by Regional Centers (such as county hospitals, emergency rooms, paramedics, police and fire protection, etc.) are not factored into the per-client cost. Regional Centers delay or deny services and find it beneficial to return money from their budgets to the state in order to have it returned and used as grant money. Hopefully, the new purchase of services procedure will remedy some of these problems. Regional Centers are not uniform in the basic services they offer. Community parents complain constantly about having to fight for diapers, respite care, recreation, and medical and dental appointments.
We do not believe that unification of the budget is the answer. Reorganization of the responsibilities and numbers of people that each Regional Center serves may be part of the answer. Twenty-one Regional Centers are not enough for California. Families and clients should be able to move records on request, thereby creating a competition among Regional Centers.
We must create an incentive for Regional Centers to better serve clients. As it is now, the client is captured and lives by the will and whims of the Regional Center. We must have a client- driven system, not one driven by the Regional Centers.
QUALITY -- It is very difficult if not impossible for families to get objective information on provider quality. This is caused by a number of reasons that we will not get into at this time. Information is needed for families to make informed decisions both before and after the person is placed. A significant concern is that some providers prohibit family members from visiting except at predetermined times.
Families need a source of objective information pertaining to providers. Information that would be valuable includes whether this is a for-profit provider, owner and staff qualifications, whether the owner and staff speak the language of the client and family, results of licensing evaluations, how long the owner has had this business, and whether the owner has done business with other regional centers or in other states.
CONSUMERS AND DISABILITIES SERVED --Our population is changing. Professional expertise must be used to develop programs for the treatment of autism and behavioral challenges. Providers must be trained and licensed. This is another reason to support the Developmental Centers as Centers of Excellence. Only the state will be able to create and maintain the expertise, management and stability necessary for professional University-affiliated programs and staff to develop specialized treatment and programs in many languages to communicate with clients and families. Read More Archived News Stories AB896 General Human Interest Litigation State Budget
CASH/PCR is a nonprofit public benefit corporation and is not organized for the private gain of any person. It is organized under the California Nonprofit Public Benefit Corporation law for public and charitable purposes. |
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