Building and Maintaining Our Communities
Growth and Opportunities
On June 22, 1999 the U.S. Supreme Court ruled in the Olmstead Case that states are required to provide community based supports and services for people with mental disabilities if treatment professionals determine it appropriate and if the individual does not object to such placement.
The Olmstead decision highlights the dramatic changes in the provision of services and supports for people with developmental disabilities:
- The number of people with developmental disabilities in public institutions has declined from 149,892 in 1977 to 51,485 in 1999.
- During the period from 1993 to 1998, the number of people in residential services increased from 362,440 to 416,717, an increase of 15%. This expansion has been fueled by a 60% increase in people living in settings for six or fewer people.
- An equal number of people (416,441) in 1998 received state services and supports while living with families, in foster care, or in their own homes.
Despite the decrease in institutional care and the increase in community services at the beginning of the new century, there is a great variation in fiscal efforts among the states. The demand for community-based services has outpaced the rate of state development of community services. State waiting lists attest to the need for unavailable community supports and services. The National Conference of State Legislatures estimates that there is a need for an approximate 18% growth in residential services to meet the needs of people on the waiting lists.
The growth of community supports and services has been dramatic. But, recent media attention to the community service system raises questions about the quality of services and supports. From the controversial discussion of mortality rates in community services in California through the Centers for Medicare and Medicaid Services (CMS, formally HCFA) reviews in the Midwest to reports of poor quality services in Indiana, North Carolina, and the District of Columbia, the media attention is calling into question two decades of community development.
CQL is concerned about these recent developments for two reasons:
- We know from our national accreditation, training, and quality improvement consultation that there are indeed instances of poor service and support. We have witnessed instances of abuse and neglect. We recognize these limitations in the service system and continue to act on our mission and vision.
- We are concerned that the media attention is moving beyond specific situations and leading the general public and some policy makers to conclude that the community service system has failed.
Most people derive great benefits from community inclusion. Many people are on waiting lists because they need community-based supports and services. We need to understand the reason for some failures and we need to take action to support community services and supports.
A Five Point Program
The Five Point Program recognizes the current limitation in a commendable community service network. In addition, the Five Point program will address those limitations and reframe the debate over the feasibility of continued community services.
- The leaders in the field of developmental disabilities must develop a positive, affirmative vision for community services. We can no longer position community services as an alternative to the institution. We must reframe the meaning of community for people with disabilities. Moreover, we need to reframe the role of the community, citizens, business, and the independent sector in supporting people in the community. We must define our expectations, our standards for quality, and the potential and possibilities of community for people rather than organizations and programs. The old references to the institution (“at least it’s better than …”) provide no glimpse of what our community system aspires to.
- We must work with CMS and state regulators to define and measure our expectations for quality in person-centered outcomes. Personal outcomes, person-centered planning, and self-determination will not succeed if regulation and reimbursement remain stuck in institutional models and program thinking.
- We must improve working conditions for community service staff. We have built a community service system on a low wage labor model. In a period of low unemployment and a great allure of high technology, we must improve the pay, status, and morale of staff. Increasing the wage of workers alone will not be sufficient, but success will not be achieved without it.
- We must change our leadership style and recognize that older bureaucratic and formalistic forms of management simply don’t work in decentralized community systems that can be integrated and coordinated with a new information technology. Besides, managing is neither mentoring or leadership. We need skilled leaders who have knowledge and experience in how to identify and nourish the talents and values of all employees.
- We must demand that poor service quality outliers be put out of business. The community MR/DD service system expenditures amounted to $18.4 billion in 1998. That amount of money alone will attract some disreputable people to the field of developmental disabilities. CQL is not placing the blame for community service limitations on the provider system. Rather, as a national accreditation and quality improvement organization we recognize that not all service providers can be above average in the quality of supports they provide. Those providers who can not demonstrate quality in services should cease to operate.
CQL is committed to the principles of person-centeredness, community inclusion, and self-determination. CQL demonstrated that commitment in 1993 when we put aside a quarter century of tradition in measuring quality through a process compliance model and took the lead in implementing a person-centered quality enhancement system.
James Gardner, PhD
Former President and CEO, CQL