NCD Report on Deinstitutionalization: Part 3

NCD report documents significant problems in community care

Although the National Council on Disability report on Deinstitutionalization places emphasis on the mechanics of closing state-operated facilities for people with DD, it also reveals, in spite of itself, significant problems with community care that are especially alarming for families of people who currently live in those facilities. I'm sure the NCD would claim that these problems can be overcome with careful planning or that the benefits of living in "the community" outweigh the "horrors" of institutional living. Nevertheless, the barriers to safe and adequate care in the community  are significant.

from the NCD report:

• (page 27) The current fiscal constraints faced by states compound the challenge of developing and maintaining a strong community-based service system. Some states are cutting back on the amount of services they provide to each recipient or are limiting the number of service recipients.
• (page 34) The resources dedicated to people with ID/DD vary significantly across states, as does the quality of both institutional and community-based services. In some states the system works relatively well, while in others it takes a lot of ingenuity and commitment on the part of the family to obtain high-quality community services.
• (page 35) A community-based service system depends on the availability of affordable, usable housing, which is typically scarce. …Thus, people are often put on waiting lists or remain in their childhood homes far longer than they desire. One’s housing options should not determine what services one gets. All these factors need to be addressed in the plan.
• (page 35) Under the Medicaid HCBS waiver program, states have considerable flexibility in determining the type of services they will provide and the number of people to whom they will provide the services. Many states have long waiting lists for services. Although current institution residents are guaranteed a space in the community and are not placed on a waiting list, the existence of waiting lists for people who are not in institutions casts doubt on a state’s commitment to community living.
• (page 35) When people with disabilities are disbursed widely in a community, as is desirable, specialized health care and dental services may not be available locally. In 49 states, Medicaid does not pay for routine dental care. Furthermore, many service providers are unwilling to accept Medicaid reimbursement, which they believe is inadequate, further limiting the availability of some practitioners. [emphasis added]
• (page 47) In 2009, an estimated 122,000 people in the United States were on waiting lists for residential services. A state may modify the limit with permission from the Centers for Medicare and Medicaid Services (CMS).
• (page 59) “Our system of community-based supports is not perfect. It remains underfunded, provider wages and training are inadequate, and we must improve client safety in the system. However, Oregonians with disabilities have some things today they didn’t have 30 years ago at Fairview: freedom, dignity and a sense of belonging.” Sara Geiser, Oregon State Representative and a member of the National Council on Disability

As the parent of two adult sons who function at the level of 6-12 month old infants, and live in a 6-bed group home, I know from experience  that parents often fill in gaps in services. We pay for our sons to attend an activity program 3 days per week, we bring them home for part of the day most weekends, and we monitor the group home and their medical care closely. For my older son, we pay $1,000 every time he gets his teeth cleaned, because he needs to be sedated and we have not found a dentist who is willing to do this and accept Medicaid payments. For a number of years my older son experienced the devastating effect of poorly trained staff, high staff turnover, poor management, and inadequate quality controls in his group home. For those who live in unlicensed smaller settings, people with severe disabilities often suffer from neglect and exploitation that results from a lack of supervision and sufficient oversight of the services they receive. We are fortunate that we can still oversee the care of our sons. Many other parents cannot and fear of the “system” that is supposed to care for their children is pervasive.