A. An Overview of Other State Programs
SDSD is committed to phasing out SNF and ICF placement whenever possible, and has created a community based system which offers alternatives to nursing homes. There is a statewide preadmission screening program. The state also provides a number of Services which are broadly characterized in SDSD literature as "in home services" and "substitute homes".
In-home services include home health, home delivered meals, special diets, home care, and Oregon Project Independence, as well as PCS. Home health, home delivered meals and special diets are self-explanatory.
Home care is defined as assistance with ADLs and "self-management activities" by client- employed or agency providers. Home care is funded by the 1915C and 1915D waivers, and makes up the great majority (over 90%) of PAS offered by the state. The 1915C waiver funds consumers under 65. It is a "cold bed" waiver, which links nursing home placements with community-based expenditures, and because of this linkage, funding is very limited for people under 65. The 1915C waiver must be reapplied for annually, but the 1915D waiver does not. The 1915D Waiver funds are based on a formula which uses the state's 1976 expenditures for nursing homes as the base level, and then adds a yearly growth factor based upon the consumer price index and an estimate of the growth in the aging population (roughly 10.5% growth per year). The 1915D waiver has the advantage of growing at a predictable rate and therefore facilitates state planning, but when expenditures jump unexpectedly (as is presently happening under the adult transfer), the state must scramble to bring expenditures down to the specified growth rate.
Home care consumers are steered into the client-employed model because of the lower cost to the state, but agencies may be used (particularly in emergencies). Recipients say lack of support services and high turnover make client employment a tenuous and time consuming process. Income eligibility is set at 300% of SSI for these services (approximately $15,480 per year for individuals).
OPI provides PAS to people who do not meet Medicaid income eligibility requirements. This is a solely state-funded program which uses agency providers. There is an extensive waiting list for these services. Although a range of PAS and related services can be authorized, in practice funds are so restricted that services are limited to a few hours of housekeeping or assistance with low-frequency ADLs (i.e. bathing). Very few OPI recipients receive daily services.
Substitute homes include adult foster homes, residential care facilities, and assisted living facilities. Adult foster homes serve up to five people in licensed homes that function as small board and care facilities. Oregon has the highest number of adult foster care placements in the country (roughly 2500 people). Residential care facilities are more traditional board and care settings, serving six or more people. Assisted living facilities are individual living spaces which provide access to custodial care. There are currently 6 assisted living homes in Oregon, with another opening this year. PAS and skilled nursing are available on site. They differ from traditional ICF nursing homes in that they emphasize private living space and maximize consumer control in utilization of services. Staffing requirements are flexible, allowing for smaller staffs and less medical emphasis. These are a cost-effective alternative to nursing homes which allow residents to "age in place" instead of moving people to increasingly restrictive settings as their health declines.
Cost-effectiveness is a driving concern in SDSD, due in part to the strict fiscal requirements of the waivers. Consumers and advocates are concerned that this emphasis distorts service provision, as the fiscal needs of the state supersede the functional needs of the consumer.
B. Who is falling Through the Cracks?
Although Oregon has an extensive system of community based services, many services are geared primarily to low income elderly people, and other groups may be underserved or even unserved in this system. These include:
People with cognitive disabilities. The state historically has relied on large institutional facilities for people with developmental disabilities, and is now struggling to develop community alternatives. Groups such as the Association of Retarded Citizens (ARC) are advocating a greater scope of independent living services.
People with extensive PAS needs (e.g. ventilator dependent adults) cannot really be served in their own homes unless they have access to family or other volunteer services. Live-in attendants receive less than $1000 per month plus FICA and unemployment.
People who want to work. There are enormous, disincentives to employment because of strict income requirements for PCS and homecare. People who receive significant assistance from Voc. Rehab. to become "work ready" are unable to make the transition to employment if they have extensive and costly PAS needs. One homecare recipient interviewed had completed law school, but estimated that he would have to have a starting salary of over $30,000 in order to maintain his living expenses and purchase PAS on the private market.
People who want to be married. SSI income eligibility for couples is very low, so loss of benefits may discourage people from marrying. The state recently passed legislation to allow spouses to become paid attendants in some circumstances through state financing.
Younger people with disabilities in general have not had their needs adequately met by the current system, but it is too early to tell whether the adult transfer will remedy the situation. In the words of one advocate, "the disabled are where the elderly were 10 years ago."
C. The Political Future of the Personal Care Program
Personal care will probably remain a small part of SDSD services unless the waiver funding is disrupted. The transfer of PCS to OMAP may dramatically increase usage of these funds to populations currently excluded from community based PAS. Although CSD is the first division other than SDSD to access these funds, divisions which serve people with mental retardation and mental illness are also examining ways to use PCS.
In general, Oregon appears philosophically committed to developing a comprehensive and inclusive service delivery system. The adult transfer currently taking place within SDSD is part of a larger process to establish parity among seniors and other people with disabilities. There is a remarkable amount of collaboration between advocates and the DHR administration, facilitated by the Oregon Disabilities Commission. The Governor's Task Force on Disability Services has recently set out a progressive reform agenda, but the measures outlined will probably be constrained by financial concerns.