U.S. Department of Health and Human ServicesU.S. Department of Health and Human Services
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This report was prepared under contract #HHS-100-89-0025 between the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and the World Institute on Disability. For additional information about the study, you may visit the DALTCP home page at http://aspe.hhs.gov/_/office_specific/daltcp.cfm or contact the ASPE Project Officer, Pamela Doty, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. Her e-mail address is: Pamela.Doty@hhs.gov.
Quantitative analyses were based on national surveys funded the Charles Stuart Mott Foundation and by the National Institute of Disability and Rehabilitation Research (NIDRR), grant #GO08720134. The publication and distribution of this document is made possible through the Research and Training Center on Public Policy and Independent Living (NIDRR grant #H133BOO006-91), a joint project with the World Institute on Disability, InfoUse, and The Western Consortium of Public Health, University of California. The authors would like to acknowledge the contributions of the HHS project officer, Pam Doty, the advice of Deborah Lewis-Idema, Marylin Falik, Marshall Kapp, Charles Sabatino, and Linda Toms-Barker, and the support of the entire staff at the World Institute on Disability. We would like to express our special thanks to the people who to time out their busy schedules to help us plan and conduct the site visits, who agreed to be interviewed, and who reviewed these program descriptions. Without these generous contributions of time and expertise, this research project would not have been possible. The content of these reports do not represent the policies of the funding agencies, and endorsement by the federal government should not be assumed.
Selection of programs was based on information gathered in the 1985 and 1989 surveys, as well an interview conducted with Deborah Lewis-Idema, a researcher who had just completed a study of the Medicaid Personal Care Option. The states were chosen in order to represent different systems of service delivery, different provider arrangements, different sized programs, and different geographical areas. An attempt was made to avoid visiting programs which had already been studied intensively by other researchers in the field (i.e., NY, OK). The six sites chosen and the dates of the site visits were:
Montana Medicaid Personal Care Services Program--October 22-26, 1990; Inter-Mountain Region; Small program (736 clients in 1988); Single statewide agency provider; Switched to this provider mode from independent providers.
Michigan Home Help Program--November 12-16, 1990; Midwest Region; Large program (33,000 clients in 1988); Independent providers including some family members.
Oregon In-Home Services Program--December 3-7, 1990; Northwest Region; Medium program (2,594 clients in 1988); Agency Providers contracted by the counties; Part of an integrated service delivery system (Senior and Disabled Services Division).
Massachusetts Independent Living Personal Care Program--January 21-25, 1991; Northeast Region; Small program (1,518 clients in 1988); Independent providers with training, support, and billing through independent living centers.
Maryland Medical Assistance Personal Care Services Program--January 28-31, 1991; Eastern Seaboard Region; Medium program (4,000 clients in 1988); Independent providers bill state Medicaid office at a daily reimbursement rate.
Texas Primary Home Care Program--February 25-March 1, 1991; Southwest Region; large program (33,000 clients in 1988) Multiple agency providers compete for each client contract.
At each site, the research team attempted to spend two or more days in the state capital, meeting with state administrators, advisory groups, advocacy groups, county administrators, and local consumers and providers. An additional one to two days were spent in another county, talking with county administrators, as well as advocates, local consumers, and providers.
At each site, the research team interviewed 25-50 individuals, each of whom was involved in some fashion with the Personal Care program in that state. Attempts were made to talk with one or more representatives of each of the following groups:
Program advisors - advisory boards (both agency and interagency), and individuals responsible for the development of specific program policy were contacted in each state.
Program administrators - individuals who oversee the delivery of program services to consumers at both the state and local/county level were interviewed at each site. This included state administrators, local/county administrators, supervisors, and case managers. Administrators in other state departments were sometimes contacted if they were involved in related service provision (e.g. Vocational Rehabilitation, Aging Services).
Program advocates - attempts were made to contact representatives of each of the following groups: (a) Consumer advocacy groups (e.g. ILCs, ARCs, UCP, Grey Panthers, other senior advocacy groups); (b) Associations/unions representing attendants (both agency and independent providers); (c) Homecare agency associations.
Consumers - ILCs and/or other advocacy groups convened one or more small focus groups of service recipients.
Providers - provider agency administrators, nurse supervisors and attendants were interviewed whenever possible.
To identify the above individuals, the research team relied primarily on the recommendations of the state program administrators, as well as WID's existing connections with independent living centers, ARC, UCP and other groups. Many states did not have organized advocacy groups involved in PAS policy, so contacting representatives of key populations (i.e. elderly people, people with head injuries, people with mental illness) was difficult or impossible. Access to consumers was often limited because of logistical difficulty in organizing and transporting people who use PAS to a single site for group interviews. In some states it was impossible to contact attendants, because of logistical constraints, notably lack of reimbursement mechanisms.
A questionnaire was designed to address key program policy issues, including: program history, program objectives, population served, current federal regulations, the impact of proposed HCFA regulations, attendant withholding, tort liability, gatekeeping mechanisms, support services, program expenditures, and the relation of personal care to other state programs. These issued were identified based on prior WID research and on interviews with other researchers and advocates. This questionnaire was used with administrators, advisory groups, and advocates. Two other questionnaires were designed for consumers and attendants, which focused more on personal experiences with the program.
Both individual and group interviews were conducted by one or both researchers. Questionnaire protocols were used for each interview, but not all items from these protocols asked at each interview, rather items were chosen based on the expertise and preference of the interviewees as well as to fill gaps in the researchers' information. Interviews took from 45 minutes to 2 hours, depending on availability of interviewees.
Before each site visit, the state administration was mailed a program summary derived from 1984 and 1988 survey data and asked to verify the accuracy of the figures. State administrators were also asked to collect the following printed materials during the site visit (if available):
Itemized program budgets, and related financial reports from the past three fiscal or calendar years.
Total hours of PAS (or other unit of service) billed for the last three fiscal or calendar years, broken down by service type and/or population.
Any program regulations (including, but not limited to: Eligibility Requirements, Type of Services Provided, Service Limits, Supervision/Case Management Requirements, Waiting Lists, Attendant Compensation and Benefits, Family Providers, Emergency Services, Quality Assessment, and Cost Control)
Assessment tools and procedures, appeal protocols.
Published resources and training materials for consumers, families, and providers.
Any internal research: cost-benefit analyses, needs assessments, audits, evaluations, etc.
Demographic data on the population served: age, sex, ethnicity, type and severity of disabilities.
Programs varied markedly in their capacity to provide these materials, but program regulations and assessment tools were available for each site.
Program reports were based on interviews and the materials gathered on site. Copies of these reports were mailed to state administrators and to key advocates in each state for review. All advocates and all but one of the state administrations reviewed the reports, and these comments were incorporated whenever possible into the final report. Several administrators felt that the reports were too critical, or overstated the conflict between the state and advocates. This probably unavoidable, given the methodology. Because many representatives from different groups with different agendas were interviewed, there are inevitable inconsistencies and even contradictions on some issues. Whenever there were opposing points of view, an attempt was made to identify the contradictory sources of information. These programs are part of a constantly shifting political and economic climate, and therefore subject to constant modification. The information presented here represents the programs at the time of the site visits, but may no longer be an accurate portrait of the current program structures.
Administered by: Montana Department of Social and Rehabilitation Services
Date of Site Visit: October 22 to October 26, 1990
The Medicaid Personal Care Services Program is one of two personal assistance service programs in Montana administered by the State Department of Social and Rehabilitative Services (SRS). The program had a budget of $3,872,000 in FY1990, and served an average of 608 people per month. The program serves Medicaid eligible people (income eligibility is 74% of poverty level for single individuals and 83% of poverty level for couples) who need assistance with activities of daily living. Service is capped at 40 hours per week. Services are provided by a single statewide contract agency.
The Medicaid Personal Care program's main objective is to help people stay in their own homes as long as possible rather than rely on nursing homes. Cost containment is an explicit part of this objective. Roughly 60% of the clients are elderly, and receive an average of 14 hours per week.
Montana began a personal care program in 1977. Up to that time, Title XX and state funds paid for county homemakers to do personal assistance and to transport people to doctor appointments. The state did a study to examine the possibility of getting Medicaid funding to maximize federal matching funds. It was projected that the state could train county homemakers in personal care, and then charge the personal care time to Medicaid. One hundred and fourteen full time county homemakers from all over the state were trained as personal care attendants. However, the counties were unable to keep an accurate record of personal care hours, so the state was unable to get the Medicaid match.
In order to centralize billing at a state level, in 1979 the Medicaid section of the SRS started awarding personal care service contracts directly to individual providers who were recruited by disabled individuals and billing this service through the PC-Option. There was no formal outreach conducted, only a word of mouth arrangement among county social service workers who would call the state Medicaid department when it appeared that homemaker services were not enough. Workers were paid minimum wage plus a small percentage intended to pay for withholding taxes, and county nurses provided the supervision. A single nurse in the DSRS was responsible for managing the PC-Option program, so oversight and enforcement of regulation was necessarily limited. Most of the first recipients were young disabled people, and the number of hours of service provided per individual per week could range as high as 130.
Then in 1983, a Medicaid Waiver program was started for people who were nursing home eligible. This program stressed case-management as well as PAS, and capped total service expenditures at 80% of nursing home costs (this service cap had apparently been part of the state Medicaid regulations on PAS prior to the advent of the Waiver program, but there was no systematic enforcement until this point). The program began slowly: regional case-management teams were phased in county by county. In 1984-85, the waiver program staff began an extensive outreach campaign, which included community meetings, brochures, etc. This increased the county social service systems' awareness of regular Medicaid personal care services as well as waivered services: people who were not eligible for the waiver (i.e. they were not nursing home eligible), could still receive PAS.
The caseload for Medicaid Personal Care Services began to rise dramatically, and administrative pressures on the limited staff in the state office also rose. Program administrators related anecdotes of early morning phone calls from angry and frustrated consumers who's attendants had not shown up. The increasing administrative demands for this program were further aggravated by a conflict with the state Department of Labor. Several attendants who wished to file for worker's compensation brought their case to the Department of Labor, who determined that attendants could in fact be considered state employees (see section on Liability for a further discussion of this issue).
Because of the labor issues and increased administrative demands, the DSRS made an internal decision to switch to a contract agency model of service provision. An RFP was let in the fall of 1986 for regional contract agencies and concurrently for a single statewide contract agency. The RFP required that the chosen provider would have to be ready to begin service provision on Jan. 1, 1987. No bids were received for one of the regions, so West Mont, a single nonprofit homecare agency, received the statewide contract to provide PAS throughout Montana.
The implementation period was extremely short; West Mont had less than three months to develop and implement a statewide administrative system. In this implementation period, personnel policies and intake and evaluation procedures needed to be developed, and staff had to be hired, and a personnel policies. All independent providers employed in this program were required to transfer onto the West Mont payroll. In essence, this meant a cut in an already low wage, because very few of the providers were actually paying their withholding taxes (see the Attendant Issues section for a discussion of withholding).
To structure the program, West Mont relied heavily on Medicaid program regulations that had, before this point, been enforced rather sporadically. This had a dramatic impact on the services received by some clients. Some providers had been performing paramedical services, despite prohibitions in the state's Nurse Practice Act. These services were now prohibited. Relatives who had not identified themselves as such were in some cases being paid as attendants (this was particularly problematic among Native American consumers, who traditionally rely on family for such assistance), but were not allowed to become West Mont employees. Medical supervision had been inconsistent, but West Mont stressed rigorous inclusion of nurses through their agency. The new emphasis on medical supervision seemed intrusive to some clients who were used to the previous system.
Also in 1987, the program changed the rules regarding provision of services outside the home. Prior to this decision, SRS had allowed attendants to accompany recipients outside the home to school, on vacations, on shopping trips, etc. The DSRS learned of three lawsuits in other states which ruled that the Medicaid statute on personal care is limited to the home, so the state decided to change their regulations to reflect this.
These program changes were met with considerable resistance from consumers, attendants, and the Independent Living Centers. The ILCs felt that the DSRS had not planned the transition well, and failing to consult with consumers, attendants, and advocates. In response to this conflict, the state formed an advisory body of providers, consumers, case managers from the waiver program, etc., to advise West Mont and the Dept of SRS. The Personal Care Advisory Committee has no budget and no statutory mandate (which is an ongoing frustration for at least some committee members), but it has created a "buffer" between the state program and the consumer because of the consumer and ILC representation.
The change to a single statewide provider agency has had both positive and negative repercussions for consumers. Older people appear to like the change; as one administrator observed: "they do not want as much involvement in choosing an assistant, in part because they receive less intrusive services". Program services are more available, particularly in rural areas, because the contract agency is statewide. The program is generally more accountable, attendants receive training, and availability of emergency workers has increased.
Some advocates and consumers feel that the agency model changed the relationship between attendants and consumers. Instead of hiring and managing their own attendants, they are now dependent on the agency for scheduling an increasingly limited number of PAS hours from numerous and constantly changing West Mont employees. In some cases (particularly among consumers with a high level of need), there was more attendant stability when the program used independent providers. One reason for this was that the consumer recruited and hired the attendant, so there was a more personal and individually accountable relationship. Advocates say that some consumers have experienced a decline in their quality of life because of limitations on paramedical services, limitation of PAS to the home, higher level of medical supervision, and a decline in total hours of PAS provided.
The program's caseload has continued to increase in recent years. This may reflect, in part, an increase in the number of older people with relatively less severe disabilities included in the program.
Initial financial eligibility for Medicaid is assessed by the DSRS. Referrals can come from a number of sources (i.e. discharge planners, physicians, social workers, self, family, etc.). West Mont begins service upon verification of income eligibility, although in some cases they may initiate services for people who are not immediately income eligible but must spend down to Medicaid level. The agency technically has up to three weeks to notify the referral source of initiation of services, but in practice less time is required.
If there is a hazardous home situation or immediate risk of institutionalization, an emergency referral can be made. In these cases, the agency must contact the individual within 24 hours, and start providing services within 48 hours pending Medicaid verification.
Assessment of ADL needs is done by a West Mont nurse supervisor. At least one ADL is required for eligibility, and hands-on personal care rather than supervision must be the primary need of the applicant.
At the time of the assessment, the nurse supervisor give the referred individual a booklet which outlines the services which are and aren't covered, a list of West Mont contact personnel, and a description of the complaint procedure. There is an appeal process for denial of services, but some advocates felt that many consumers who are deemed ineligible for services realize that they can appeal.
A detailed plan of care is developed by the RN with the recipient, which assesses medical diagnosis, medications, diet, short and long term objectives, etc. As part of this plan of care, the type and frequency of specific ADL related tasks are listed. The client or surrogate is required to sign a consent and release form once the plan of care is adopted.
Case-management is not a regular service of the Medicaid Personal Care program. People who need case-management are referred to the Waiver program. The SRS liaison, program mangers, and West Mont program director are all social workers.
The amount and consistency of nurse supervision increased when West Mont took over the program. West Mont RNs are required to complete a plan of care every 90 days. Originally RNs were required to complete a plan of care every 60 days, but the DSRS and West Mont decided that the majority of consumers were stable and the attendants consistent enough that this level of supervision was unnecessary.
The physician must order services, and is required to reauthorize services at least once a year. Nurse supervisors attempt to contact the recipient's physician verbally prior to assessment. In some cases, instead of waiting for the physician to initiate reauthorization of services, West Mont often completes the assessment and mails the results to the recipient's physician for a signature.
Service is capped at 40 hours per week, although with prior approval by the DSRS, services above 40 hours can be provided for brief periods (e.g. post hospitalization). Over the years, as the cost per service unit has increased, the number of service units delivered has decreased. When independent providers were being paid $3.85/hour, the maximum number of hours per individual allowed was 70 per week. When the West Mont contract started in 1987, the unit cost was established at $5.25/unit, but wages (less required withholding) and maximum hours remained stable. Deciding that this pay rate was too low to retain attendants, West Mont terminated their contract with SRS on January 1, 1988. The contract went out for bid again. West Mont received a new contract in which the per unit cost was raised to $7.45, the attendant wage was raised back to $3.85 plus benefits, and the maximum hours per consumer were decreased to 56 hours per week. The per service rate was raised to $7.60 on 7/89. At that time, PCA wages began to go up, first to $4.00/hour, and then to $4.30/hour. When wages were raised, maximum services per person dropped to 40 hours/week. At the time of each change, those receiving the higher levels of service were grandfathered in (there are a few people receiving over 100 hours/week under this clause).
It is clear that quality of life for some consumers is being adversely affected by the service limits. Moreover, nurse supervisors point out that cutting hours may not decrease overall costs. The logistical demands of coordinating attendant services increase as the maximum hours decrease, because more attendants are needed to visit for brief amounts of time to meet minimum ADL needs of clients. This leads to increased administrative costs, which may offset some of the savings obtained by limiting billable hours.
The state's nurse practice act prohibits the provision of "invasive medical procedures" by unlicensed individuals, and prohibits tasks like injections, internal catheters, bowel programs, etc. Although the regulation did not change when agencies took over service provision, adherence to the regulation increased markedly. Previously, IPs had apparently performed paramedical functions (i.e. injections, dressing changes). Currently, the state subcontracts with home health aides (HHAs) to provide medical services. Increasing nurse supervision and using HHAs has increased program costs.
West Mont has on-call attendants at all times for emergencies. A recipient must have an ongoing need for services; respite by itself is not an allowed service.
The program doesn't allow attendants to perform heavy maintenance or chore services, e.g. chopping wood, shoveling snow. Housekeeping services are not provided except as incidental to personal care.
Supervision is not a primary task allowed in the Medicaid Personal Care program (although clients who need this service may be served by the Waiver). In practice, tasks may be spread out over the day or week, as a way to monitor some consumers.
As part of the referral process, physicians are required to assess the consumer's ability to take care of their own health and safety needs for the time they are not receiving attendant services. The program therefore makes the general assumption that the individuals referred are competent to self-manage when the attendant is not in the home.
West Mont and SRS administrators expressed concerns about this policy in some individual cases, but ultimately the decision to utilize the program rests in the hands of the consumer. If the nurse supervisor thinks a recipients' health and safety needs are in jeopardy, s/he may make a referral to Adult Protective Services (APS). In the past, such individuals would probably have been denied services altogether, and most likely referred to a nursing home. Now APS assesses an individual's competence and the risks of staying in the community with only 40 hours of service per week, and asks the individual or a guardian to decide if he or she is willing to take these risks.
Provision of PAS is now limited to the consumer's home. With prior authorization, the state will provide PAS to people in foster or group homes if the individual's that are more than is normally provided for in these homes. An attendant sharing co-op facility for people with physical disabilities is currently under construction in Missoula with HUD funds, and PAS will be paid for by the Medicaid PC-Option to residents.
West Mont usually does this, although they actively encourage the consumer to recruit their own attendants and refer them to West Mont for hiring and training. The general impression among advocates and providers was that this did not occur very frequently. Consumer choice of attendants is therefore usually limited to the current attendant pool.
West Mont does an initial screening of applicants.
West Mont does all hiring procedures.
There is no certification required, although there was some talk of requiring attendant certification in the future.
West Mont does all hiring procedures.
An initial 16 hour training is required, but can be waived if the attendant is a certified Home Health Aide or LPN. The training includes orientation to the agency/community services, body mechanics/transfer/assisting patient mobility, personal care skills, care of home/personal belongings, safety/accident prevention, food/nutrition/meal preparation, and health oriented record keeping, including time records. West Mont may also set up one to one training with the consumer in order to learn techniques specific to that individual. Some attendants felt that more of this type of on the job training would be useful. This training requirement is apparently in conflict with the staffing demands in some of the local offices; training occurs on a regular schedule (e.g. monthly) but turnover occurs all the time, so attendants may end up working before they receive training if the nurse supervisor considers them competent.
An additional 8 hours of in-service training are required each year. Four hours are a review of the 16 hour training, and another 4 are in topic specific modules offered throughout the year, e.g., AIDS, death and dying, diabetes, etc.
The nurse supervisor is required to make sure the plan of care is being followed. According to nurse supervisors, some informal monitoring may occur among attendants, i.e., since several attendants usually serve each recipient, they can tell whether the attendant who came in before them did the tasks required.
Attendants are paid an hourly wage and mileage reimbursement by West Mont.
West Mont is responsible for attendant termination.
Recipients can contact the scheduler or nurse supervisor if there is a problem, and West Mont administrators stressed their willingness to respond to consumer complaints. In practice, some advocates say the Tole of West Mont as the single source of attendant services creates a power dynamic where consumers are afraid of "rocking the boat" by complaining about their attendants. The DSRS has a formal appeal process if the recipient is unable to resolve the conflict with agency staff.
There is no formal mechanism for consumer advocacy outside the West Mont and DSRS system, although independent living centers provide advocacy and peer support in some areas. If services are terminated, a detailed explanation is provided for the discharge which also outlines options for appeal. Services are continued throughout the appeal process.
No consumer training is offered.
West Mont does some outreach to different professional groups to inform them of the services available.
There is a bi-annual state compliance review of West Mont which looks at components mandated by the program, i.e. medical supervision, assessment, training, maintaining attendant pools, billing procedures. West Mont also conducts quarterly interviews with a small subset of service recipients to assess satisfaction level.
The program has used a rigid HCFA definition of family exclusions (i.e. husband, wife, parent, child, sibling, adoptive child, stepparent, stepchild, stepbrother, stepsister, father in law, mother in law, daughter in law, sister in law, brother in law, grandparents, grandchild are not allowed to become providers) since 1982, but compliance wasn't monitored before West Mont. The exclusion of all family providers apparently caused particular problems for Native American consumers, who have a strong cultural tradition of family support. Many of these consumers simply dropped off the rolls.
The starting hourly rate for West Mont attendants is $4.00, which is raised to $4.30/hour after 3 months. This wage is paid for travel to and from the recipients home, as well as time on site. The demands of a growing caseload have increased pressure on West Mont to recruit and maintain an adequate labor pool. West Mont and the DSRS, pointing to an attendant turnover rate of approximately 150%, have lobbied the legislature for increases in the per unit reimbursement by the state, in order to pay for increased attendant training, wages and benefits, as well as increased administrative costs. The reimbursement level has been increased, but in order to curtail the increasing costs of the program, services have become more limited.
The state currently pays a total of $7.75/hour of service, 71% of which goes to attendants. Overall, West Mont Administration says that 89% goes to salaries and taxes and 11 % goes to fixed costs. The specific breakdown provided by the SDSD is:
| $ 5.52 | PCA Wages and Benefits (including overtime) |
| $ 0.97 | Administrative Staff (includes scheduling) |
| $ 0.67 | Rent, Supplies, Travel, etc. |
| $ 0.47 | Nurse Supervision for PCAs |
| $ 0.12 | PCA Training |
| --------- | |
| $ 7.75 | Total Cost Per Hour |
Social security and worker's compensation are deducted, and health insurance is offered. Personal leave and overtime for holidays are also offered.
As can be seen from the program's history, attendant liability issues were a critical catalyst in Montana's decision to switch to an agency provider. Until 1984, attendants were paid $3.85 an hour, $.50 of which was supposed to go to social security, worker's compensation and unemployment insurance. In fact, most attendants did not do any withholding, and pocketed the entire $3.85/hour. In 1984, some former attendants applied for unemployment insurance. The DSRS claimed that the attendants were independent contractors, but the Montana Department of Labor ruled that attendants were state employees eligible for worker's compensation and unemployment, and that the DSRS was responsible for withholding FICA. The DSRS appealed the decision, but ultimately paid back withholding to the DOL.
The state did not want the 1500 attendants considered as state employees, and feared that the DOL ruling would be used to lobby for provision of full government worker benefits to all attendants. To avoid this possibility as well as to be rid of withholding responsibilities, the state administration decided to shift to an agency mode as soon as possible. When a single state provider agency was selected, the majority of attendants working in the program became West Mont employees. Because West Mont began to do withholding, attendants received $3.35/hour and the other $.50 went for benefits. Attendants lobbied the legislature because they felt they had in fact received a pay cut. At that time, West Mont began to receive $5.15 per hour to cover the costs of nurse supervision, administration, and an additional $.19 needed to augment the withholding for attendants. Lobbying has continued to increase the state reimbursement rate in order to provide higher wages and benefits.
The other source of PAS in DSRS the Medicaid Home and Community-Based Services Waiver program (which has a slightly higher budget and caseload). This program involves varying degrees of case-management and may provide services other than personal care. The Waiver program has an extensive waiting list. A Title III program offers services primarily homemaking services to older people.
In general, services for people with disabilities are fragmented among disability groups in Montana. There are departments in the state government concerned with the services for those with DD, ED or those who are aging, but adults with disabilities as a whole do not have a department which addresses their needs. There are referral relationships across departments, i.e. Social and Rehab Services, DD Council and Family Services.
According to some advocates, people with exclusively cognitive or mental disabilities who primarily need supervision are not adequately served by either the waiver or personal care programs. Under the waiver, people who are nursing home eligible can theoretically get up to 40 hours of personal care per week as well as case management, as long as the total cost of services falls below the expenditure cap (if extensive case management or other support services are provided, less than 40 hours of attendant care are available). Homemaker services, respite services, adult day health, nursing, transportation, environmental modification and other services are also available under the waiver.
Individuals with an ongoing level of need higher than 40 hours (other than those who were grandfathered in before service caps were set) are not served by any attendant care program in the state, except for 7 slots on the Waiver program for people who otherwise would need 24 hour hospital care. When administrators were asked "what happens now to the people who come into the program needing more than 40 hours per week of services?", the answer varied with the respondent, from "there has been no increase in nursing home utilization rates so people are simply making do" to "those who can move to other states". Advocates say that such individuals are remaining in nursing homes, or attempting to link together additional community or personal resources.
The state may soon switch to regional contract agencies rather than a single statewide contract. The contract with West Mont is coming up for renewal in June of 1991, and since there is a more reasonable implementation period, the regional approach may be feasible. State administrators suspect that cooperation and contentment may be higher because there is a perception in the counties "that anything administered from Helena can't be any good". The program would be administered closer to home and this would make dealing with individual problems easier. However, provision in rural areas might become even more difficult, and there is some concern that administrative costs may increase markedly with a decentralized administration.
The Personal Care Advisory Committee has proposed a more consumer-directed pilot project. The pilot is intended to serve a small number of people. This is because the rationale for the pilot was based primarily on the results of a conference the advisory committee hosted in Montana with New York's Options for Independence in December of 1989. Looking at utilization rates in New York, Options for Independence concludes that only 1% of the recipients in the state are actually functioning at a high enough level to be self directing. After examining their caseloads, West Mont supervisors and DSRS administrators concur with this figure (although other national disability advocates consider this estimate extremely low).
The pilot project was almost derailed when the chair of the committee, a person with a disability who was also a member of the state legislature, proposed a case-management based program during the legislative session, claiming he had the backing of the full advisory committee. This project was dramatically different from the self-management model many members of the committee had envisioned. Not surprisingly, the legislature was dubious of the dissention within the committee, but ultimately passed two pilot projects.
There has apparently been no follow-up on the case-management based pilot program, and problems have also emerged with the self-management pilot RFP. The first time the RFP was submitted, only one proposal came in. Some advocates felt that the RFP required too much nursing supervision and control, and all parties considered the timeline unrealistic. The RFP has gone out again with some changes in timing, and has apparently met with a better response.
There is also talk of requiring attendant certification and creating some sort of career ladder among attendants in order to cope with high turnover, but fiscal pressures may preclude such action. The wage rate will be raised to a starting rate of $4.25/hour on January 1, 1991, in order to reflect a rise in the minimum wage.
Dept. of Social and Rehab Services:
Vocational Rehab:
Personal Care Advisory Council:
West Mont Homecare Corporation:
Summit Independent Living Center:
Montana Independent Living Project:
Date of Site Visit: November 13 to November 16, 1990
Administrative Agency: Michigan Department of Social Services
The Home Help Services (HHS) program is administered by the Michigan Department of Social Services (DSS). Program expenditures were $91 million in FY 1990, and provides Personal Care to an average of 27,558 people per month at an average cost of $275 per person per month. HHS serves SSI and Medicaid recipients. The program primarily utilizes independent providers and family members, although private agencies may be used in some cases. Expenditures are capped at $333 per client per month, unless a special policy exception is authorized. The program objectives are:
Support the client in his/her own place of residence as the normal or preferred mode of independence and self-determination.
Encourage the development of maximum self-determination and independence possible in the individual and authorize services only to the extent necessitated by the individual's functional limitations.
Support available and functioning natural support systems (i.e. friends, neighbors, relatives) whenever possible.
A chore program was started by the DSS in 1972, which evolved into an informal family support program for older people and adults with mental retardation. A stipend of up to $240 per month was given, primarily for family members and friends providing PAS. The program was state and Title XX funded, and there was little formal state policy.
This program grew steadily as more families became aware of the service, but during a budget crisis in 1978, the DSS circulated a proposal to eliminate payment to family providers. The ensuing uproar led to legislative hearings in which advocates and consumers, led by the Association of Retarded Citizens, convinced the state that the program services were important and cost-effective. The funding base was actually increased, and solidified state support for the program. The hearings also brought the Independent Living Centers into the debate, and program regulations began to reflect their philosophy. The state director of DSS became a strong advocate for expansion of community based services to people with disabilities.
As awareness of program services grew, so did expenditures. Title XX funds began to dry up, and the DSS began looking into other sources of federal support. In 1980, after reviewing existing programs in other parts of the country, Michigan decided to add the Personal Care Option to its Medicaid plan.
DSS staff collaborated with the regional HCFA representative to maintain the main features of their existing program, but added a medical supervision component and formalized case management. They were able to get around the exclusion of family providers by defining family in a very narrow way (i.e. spouse or parent of a minor). A fee schedule for people who don't meet Medicaid income eligibility and chore services remained part of the HHS, but these services are funded solely by state dollars. The program remained fairly decentralized in terms of administration.
The service cap has inched toward its current level of $333 per client per month, but this cap is, according to an adult service worker, "program driven, not needs driven." By keeping most payments at $333, the state is not responsible for unemployment benefits. In 1984, formal exceptions to this cap were added to the state policy manual. Roughly 2000 people currently receive "expanded home help", most of whom are considered at risk of institutionalization. Some recipients receive ongoing case-management, including home visits every 2 months.
The state again faces a serious budget deficit, and the DSS is looking for ways to cut Reprogram expenditures. Hiring of new staff has been frozen for some time. They will try to separately identify the cost of chore services and cap or drop them completely. They are also pressuring the counties to increase the number of case-managed recipients, in order to bill Medicaid for a higher number of home visits to further reduce state expenditures.
Adult service workers are responsible for eligibility determination, and eligibility is reassessed every 12 months. If someone has an income greater then 78% of the poverty level (the Michigan income eligibility level) then s/he has the option to spend down to the Medicaid income level on a month to month basis, based on a six month projection of the individual's income and disability related expenses. The state will pay the portion of PAS expenses after the spend down limit is reached, but the limit is so low that it does little to eliminate work disincentives.
Assets must be less than $2000 for an individual or $3000 for a couple; less home, car, household goods, and life insurance. Income and asset requirements are very strict for couples, and there are cases of people getting divorces in order to be eligible for service. Functional Imitation must also be documented, i.e. need for assistance with ADLs, housekeeping, or chore services.
A plan of services for each consumer is developed by the adult services worker, and reviewed every 6 months. The DSS has tried to come up with standard time allocations for each PAS task in order to assure uniformity in needs assessment among different counties, but has met stiff resistance from workers, who think that the proposed formulas do not take into account the differing needs and circumstances of consumers. Currently, each county has a different method for assessing the time allocated for different PAS tasks. If there is a dispute over the allotted hours in one county, individuals are asked to keep an actual log of time spent on PAS for a certain period in order to document the actual hours needed.
Three different state agencies do case management with Medicaid funds, and all can access the HHS program for their clients. However, consumers may receive HHS through the DSS without any case-management after initial eligibility determination and needs assessment. DSS adult services workers are required to have a college degree and to participate in a state case-management training program. The DSS distinguishes a subset of HHS recipients as case-managed, and requires a home visit roughly every two months for these consumers. This service was originally designed for consumers who need a higher level of support, but is now also viewed as a way to leverage federal funding. The DSS bills Medicaid $234 per case management visit, and in the current fiscal crisis considers this an essential source of staffing funds. They have therefore issued a directive that the counties must put at least 25% of their HHS caseload into case-management.
In Kent County, the local office has recently set the following guidelines for who gets on case management: (1) individuals who receive physical disabilities services from DSS, (2) expenditure exceptions who receive more than $333 per month, (3) people who receive more than a certain number of hours per month, (4) all new cases, and (5) people in unstable or failing health. The move to increase case management has caused enormous pressure on service workers. Consumers who were formerly called occasionally now must be visited at home. When a case is opened for case management, the worker must prepare a detailed assessment and a detailed service plan. The paper work is much more cumbersome for such cases.
There has been an ongoing hiring freeze on service workers which has caused the cases per worker to jump in many counties. In one county, there are now 125 cases per worker. The hiring freeze also means that when a worker leaves a position, his/her cases are given to remaining staff. This has led to greater tension among workers. With the increased pressures, service workers and advocates are concerned that client needs are being ignored for the sake of expediency. For example, HHS exceptions for services above the $333 cap require a great deal of additional documentation and time. Workers may decide they simply don't have time to do the extra work.
The Area Agencies on Aging (AAAs) will become involved in case management if they are the point of entry for services. The AAAs use RNs for case management. If the individual is determined not to need such intensive ongoing services (i.e. are not at risk for nursing home placement) and qualifies for Medicaid, then case management responsibility is transferred to DSS.
The needs assessment completed by the service worker is mailed to the applicant's physician. Services may begin as soon as Adult Services determines eligibility, but a physician's certificate of need must be received within 60 days of the start of services. The authorization is good indefinitely, unless the physician specifies a time limit. A state RN reviews all case documentation annually.
Services are capped at $333 per person per month. It is possible for an individual to receive "expanded home help" if the adult service worker documents the additional need through a special (and apparently time-consuming) procedure. Exceptions up to $999 per month may be approved by the county supervisor. Requests for exceptions above this amount must be sent to the state office for approval. Some people who are ventilator users get $2000 per month for 24 hour PAS (as opposed to $8000/month for special nursing home reimbursement). There are roughly 1800 exceptions statewide.
Attendants are allowed to assist with self-administered medication, but other paramedical services cannot be provided by the attendant. Home help may be coordinated with home health services, so that periodic nursing visits, physical therapy and home health aides may be provided in the home.
Respite and emergency services are not a regular part of the home help program. This is seen as a real shortcoming by consumers and a disincentive to moving out of congregate housing: those who live in congregate housing can ask attendants of friends to help out when an attendant doesn't show up, but those living independently have problems.
Light housekeeping are a part of the personal care services billed through Medicaid, and heavier "chore services" may be provided through state funds. Chore service funds are limited, however, and may be eliminated in the near future.
Supervision is not a covered personal care service. In some cases, the fact that family members in the consumer's home may be paid for personal care allows the consumer to receive the necessary supervision from the relative as well.
Home help can be provided in individual homes, board and care homes, and small group homes. Medicaid personal care funding is also accessed for adult foster care and homes for the aged, but this is not part of the Home Help program (see section VIIA for a further discussion of Personal Care in these settings).
There are no systematic recruitment efforts, in part because the state does not want to appear to be the employer. Counties maintain lists of independent providers, but these are often out of date and aren't a viable resource for consumers or adult service workers.
Because of flexible family regulations, almost half of the providers are relatives. According to case workers, most consumers have people they want to become attendants, so recruitment is not usually an issue. People who need the most help with recruitment are those who are new to the area and have few community connections, those who are difficult to work for, and those who need several attendants because they have high levels of need. People who live in congregate housing have an easier time retaining attendants because attendants can work for more than one person.
Recipients say that the low wages, lack of benefits, and low hours generally make work as an attendant undesirable. Some consumers recruit family members only because they can't find anyone else. In Kent county, the Independent Living Center has written a grant to access DSS county discretionary funds to launch a provider recruiting project. Program regulations allow people to use agency providers, but $333 per month doesn't buy much PAS from agencies.
Recipients are responsible for screening.
The recipient and service worker jointly interview the attendant.
The caseworker must certify that the attendant is capable of doing the tasks outlined in the service plan.
Recipients are responsible for hiring attendants.
Recipients are responsible for training attendants.
Recipients are responsible for supervision.
The recipients are responsible for attendant payment and FICA withholding. This is one of the most controversial aspects of the program (see "attendant withholding", section VID, below).
Recipients are responsible for firing attendants, but lack of available replacements or back up makes this difficult. People who have live-in attendants may experience even more difficulty in firing attendants, because of landlord tenant law.
Service workers are responsible for mediating disputes between attendants and consumers.
There is no formal source of advocacy within the DSS other than the service workers. The Department of Rehabilitation has a client assistance program, and independent living centers and other groups may provide advocacy.
Consumer training is not a regular Medicaid service. Consumers who are also involved with Physical Disability Services (PDS) may receive management training from Centers for Independent Living in some regions.
There is no formal program of consumer outreach, although workers are asked to present information on program services to disability or service provider groups.
Recipients are responsible for monitoring their own services and calling workers if there is a problem. DSS conducts occasional field reviews, and monitors documentation.
Family members, other than spouse or parent of minor, are allowed to become paid providers. The exclusion of spouses is problematic, according to advocates. If an applicant is married, his/her spouse is required to provide PAS and housekeeping if physically capable, except during the spouse's work hours. Although many families benefit from flexible regulations on family providers, the low pay and lack of benefits make family providers the only viable option for many consumers. Because most recipients are from families with low incomes, the PAS stipend may become an important part of household resources, making it difficult for recipients to move out of the family home. Despite these problems, DSS representatives think that flexibility on this point is a strength of the program. A cost-cutting proposal to eliminate family providers, based on the assumption that the family would continue to provide PAS, seems unlikely to be implemented.
Wages usually are at or near minimum wage, but each county pays a different rate, from $3.35 to $6.00 per hour (the highest rates are in the suburban Detroit area). It is possible to make individual exceptions for a higher hourly rate, which is important for individuals needing very reliable attendants (e.g. for high level quads). A two-party check is usually issued to the consumer, who must sign it in order for the attendant to receive payment. Low wages are being challenged by a number of advocacy groups.
Social security is theoretically provided for independent providers, but this depends on the recipients doing the withholding. Unemployment should be provided for attendants working for consumers with exceptions over the $333 limit.
FICA withholding policy is probably the weakest feature of the program. In order to avoid responsibility for withholding (and the concomitant expenditures), the state has gone to great lengths to demonstrate that they are not the attendant employer. No workers compensation is provided to attendants, and claims brought against the state have been settled out of court. By federal law, all employees are required to have FICA withheld. For employees earning over $333 per month, federal and state unemployment insurance must also be withheld. The current service cap is therefore driven more by administrative expediency than consumer need.
The attendant is considered an employee of the client. The employer (the client) is supposed to pay half of the FICA, the attendant is supposed to pay the other half. Not surprisingly, in some situations these minimum wage workers don't pay these taxes and instead keep the entire amount. The state adds the employer share of the FICA to the reimbursement check, but some consumers sign the entire amount over to the attendant, rather than keep track of the withholding. It takes a diligent and informed recipient to actually apply for an employer number, cash the check, deduct both the recipient and employer share of FICA, bank it and pay the IRS every quarter.
The employment tax withholding system is not automated, and the state does not furnish the IRS with copies of the attendant list. Some of the adult service workers interviewed admitted telling their clients "don't worry about withholding", on the assumption that the IRS will rarely go after such small sums of money. However, if the IRS does become aware of an attendant's employment, either through a workers compensation claim or social security claim, they may send a letter ordering the recipient to pay back taxes. The counties deal with such cases individually, and may pay back taxes if required.
The DSS recognizes that this solution is untenable in the long term, and has recommended changes. The system in general fails to provide even the most basic protection to attendants, and this is a major barrier to hiring and retaining quality attendants. The DSS recommends developing an automated withholding system with payment directly to IRS, but the projected cost ($3 million) precludes implementation in the near future. Advocates say, at the very least, consumers should be offered training on withholding procedures.
The Home Help Services program is clearly the largest source of PAS in Michigan. In addition, Personal Care funds are used by the Department of Mental Health (DMH) to serve roughly 17,000 people in adult foster care, board and care homes, and supported living homes. The DMH also administers a special waiver for roughly 150 people with developmental disabilities which provides supervision, and two small waivers for children with disabilities. The DMH also offers a Family Support Subsidy which is a cash grant to families with severely disabled children which may be used for PAS.
The DSS administers a small program called Physical Disability Services to fill service gaps. Training, home and vehicle modification, transportation, physical, occupational or speech therapy may all be provided through this program. Each county receives a small amount of state money which it may use for any of these services. Service workers say that these funds are very limited, and usually run out well before the end of the fiscal year.
The Office on Service to the Aging (OSA) administers the In-Home Services program for people over 60 years old. There are no unduplicated counts of PAS recipients served, but PAS expenditures were roughly $6.2 million in 1987 for an estimated 30,000 people. There is an extensive waiting list for these services (over 1500 people in 1987). Services are coordinated through the local Area Agencies on Aging (AAAs), and attendant services are purchased from home health agencies. The OSA has started a pre-admission screening program, which currently serves 1500 people. It targets the "frail elderly" at risk of institutionalization or already in nursing homes, and provides intensive case-management and a full range of support services as well as agency attendants. Most recipients don't have informal supports available, and half live alone. OSA administrators believe that this program needs to be expanded, because the high- need elderly population is not being adequately served by the relatively unskilled independent providers used by DSS.
Michigan Rehabilitation Services (MRS) administers two small programs which include PAS for specific populations. One is a joint project with the DSS which targets people with traumatic brain injuries and other severe disabilities, and provides intensive rehabilitation and case management as well as home help. A small pilot program at MRS offers up to $750 per month for PAS for people who work at least 20 hours per week. Independent Living Centers in Ann Arbor and Grand Rapids are coordinating services for approximately 20 recipients. The State Independent Living Council (SILC) is frustrated with the current expenditure level for this program, and thinks that a concerted effort must be made to address the needs of working people who need PAS.
Despite the scope of Home Help Services, many groups of people who could benefit from PAS are unserved or underserved. The major groups who fall through the cracks are:
The "frail elderly" and other people who need more intensive support services or skilled services.
Those who don't meet income and asset eligibility. Strict requirements exclude the middle class, despite spend down formulas.
People who want to work. The pilot program offered by MRS could be expanded to meet the needs of this population.
People who are married. Strict income requirements often exclude couples altogether. For HHS recipients, the spouse is required to provide most of the service, despite the strain on the consumer, the spouse, and the relationship.
People with cognitive disabilities. They may end up in more restrictive settings in the Community Mental Health system, although they could live independently with adequate support.
People who need ongoing medical care, e.g. daily injections.
People who need only supervision, e.g., people with Alzheimers.
People who are intimidated or reluctant to enter the "welfare system". Advocates say that older people may not be accessing the service, either because of a perceived stigma or because the procedures may be overwhelming.
A severe budget crisis, combined with the advent of a new fiscally conservative Republican administration, make program cuts appear inevitable. The DSS has been directed to present ways of reducing costs by 10% in FY 1992. Likely targets are programs funded solely by state dollars. Recipients who only receive chore services may be dropped completely, as may the "income eligibles" who spend down to Medicaid eligibility. The PDS program mentioned above may not survive the budget cuts because it is totally state funded.
The DSS has directed the counties to increase the number of case-managed recipients to 25% of the total HHS caseload, in order to bill Medicaid for a higher number of home visits. Hiring of new service workers has been frozen for some time, and this will probably continue. The added stress on county offices may negatively impact day to day delivery of services.
Elimination of family providers has also been proposed, but administrators anticipate a considerable political backlash if this tactic is used. Elimination of all exceptions has been discussed, but this would simply force many individuals into institutions and defeat the whole purpose of the program. Spend-down formulas could be restricted or eliminated.
Budget crises are nothing new to Michigan, and state administrators remain fairly sanguine despite the current climate. Long term plans exist to address the attendant withholding problem through implementation of a statewide withholding system. Discussions of increases in attendant wages are occurring. The spend down formulas are being modified to make them a more viable consumer option.
New grassroots political pressure for program expansion and change is coming from a coalition of groups led by United Cerebral Palsy (UCP). The State Independent Living Council (SILC) has a personal care subcommittee which is also working on these issues. In the past, the DSS has successfully worked with such groups to impress upon the legislature the value of the state's disability services.
POSTSCRIPT - After the site visit to Michigan was conducted, the state instituted a series of budget cuts which directly impact the Home Help Program. Chore services were cut completely for all recipients, and those recipients who spend down to income eligibility were dropped from the program. These cuts reduced the program caseload by 400-500 people. Medicaid income eligibility was restricted, cutting an additional 1500 people from the program caseload.
Department of Social Services:
Office on Aging:
United Cerebral Palsy:
Association of Retarded Citizens:
Protection and Advocacy:
Developmental Disabilities Council:
Department of Rehabilitation Services:
State Independent Living Council:
Kent County Center for Independent Living:
Program Consumers:
Date of Site Visit: December 3 to December 6, 1990
Administrative Agency: Oregon Office of Medical Assistance Programs, Department of Human Resources
Personal Care Services (PCS) in Oregon is a small part of a comprehensive and integrated state system of community-based services. Administration of PCS has recently been transferred from the Senior and Disabled Services Division (SDSD) of the Department of Human Resources (DHR) to the Office of Medical Assistance Programs (OMAP), as part of a larger restructuring of services. PCS is provided by certified nursing assistants (CNAs) to people with ,relatively low hour needs who meet SSI income eligibility requirements ($5160 per year for individuals). Roughly 300 SDSD clients are currently being served through this program. The funds are also beginning to be used by the Children's Services Division (CSD) to supplement foster care for children with disabilities. Currently 120 children are being served through this program, and OMAP is planning to expand this component of PCS. Personal care is also being discussed as a source of PAS for people with mental retardation and mental illness. The objective of the PCS segment of the state's community-based services is to fill the gaps in Oregon's system.
Oregon began to address the problem of increasing nursing home enrollment in 1975 with a state funded program called Oregon Project Independence (OPI). Prior to this time, limited chore services were available only to people whose incomes were below poverty level, and people who could not access these services ended up in costly nursing homes or state-funded institutions. OPI provided PAS on a sliding fee scale through homecare agencies to people over 60. The program was administered through the local Area Agencies on Aging (AAAs). In 1977, soon after OPI was implemented, the Personal Care Option was added to the state Medicaid plan in order to access federal funding and provide similar services to people of all ages who met income eligibility requirements. This program was administered through the county social service offices. The state also began pre-admission screening, and expanded adult foster care and other community based residential care as an alternative to nursing home placement.
The AAAs and their advisory committees were a natural constituency for expanding and developing senior services, and they became the core of a politically powerful and organized advocacy group by the late 70s. They were instrumental in the passage of nursing home reform and elder abuse laws. These advocates began to address the duplication of effort and lack of coordination among community-based services for seniors, i.e., AAA services (OPI, senior centers, daycare, nutritional programs) and traditional 'welfare' services (Medicaid, personal care, Title XX chore service, adult foster care). The Commission on Aging formally organized the Governor's Commission on Senior Services, comprised of advocates, consumers, administrators and providers, to address these issues.
In the same period, the federal government was also growing concerned with increasing Medicaid expenditures, and was looking at new ways of increasing community based services in order to slow the number of people entering nursing homes. The Administration on Aging and HCFA developed demonstration Long Term Care Development Grants, which freed up institutional funds for community based services. They also created small Flexible Integration Grants (FIG), which provided funds to facilitate the transition to more coordinated service delivery systems. Oregon, which was already addressing these concerns at a state level, was a logical recipient of these funds.
A demonstration project was started in three counties; one county redirected funding using the LTC Development Grant, one county which made structural changes in the administrative system with a FIG, and one county restructured both administration and funding. The combination of integrating administration and targeting expenditures was very successful.
These results encouraged the Governor's Commission to develop legislation which in 1981 integrated the administration of senior services by creating the Senior Service Division of the Department of Human Resources. With this integration underway, the state successfully applied for the first of the new Medicaid Home and Community Based Waivers, a statewide extension of the LTC Development Grants created by the Omnibus Budget Reconciliation Act of 1981.
The new legislation called for a single entry point for all senior and disabled services. The agencies considered most appropriate for this function were the AAAs, but this meant integrating the informal AAA structures with the county welfare system. Most AAAs (90%) agreed to the transition, and in the remainder of the counties district offices were created for Senior Services.
This transition, from the passage of legislation to the creation of a single state agency with offices throughout the state, took place in less than a year. Friction between the major players were therefore inevitable. The state utilized a process called Negotiated Investment Strategy (NIS) within the Governor's Commission to address these concerns. Groups of five people were formed into four "tables" which represented each of the following groups: Senior Services, AAAs, service providers, elderly advocates, and disability advocates. These groups met regularly in full day forums to clarify the roles each group would play in the new system. This process facilitated consensus and clarified policy directions. The Commission continues to meet at least twice a year, and has remained an integral part of the planning, policy, and 36 budgetary process of the state.
In 1985, the Commission helped pass the Nurse Delegation Act, legislation which modified the state's Nurse Practice Act and allowed nurses to train and supervise providers in delivering many paramedical services. This legislation has not impacted the independent providers who provide the bulk of PAS under the waivers, but has allowed for more cost-effective provision of PAS in Adult Foster Homes and other residential programs.
With the implementation of the 1915C Waiver in 1981, the PCS program's caseload dropped to its current level of 300 people. The Waiver was viewed as a more flexible program, which allowed for independent providers as well as contract providers, and set income eligibility at 300% of SSI (rather than 100% for Personal Care). Senior Services has viewed Medicaid Personal Care as a funding fall-back option. If the state didn't have to reapply annually for the 1915C Waiver, Senior Services administrators said they would have phased out PCS altogether.
A special Medicaid 1915D Waiver for people over 65 was implemented in 1987. This has stabilized Oregon's funding: the Federal government apparently cannot deny a 1915D waiver application as it can for the 1915C waiver. The 1915D Waiver does not have the "cold bed" linkage of most waivers, which tie funding to utilization of existing nursing home slots. Funding is instead 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 (this generally amounts to 10.5% per year).
In 1988, PCS began to use certified nursing assistants (CNAs) from contract agencies exclusively. PCS has recently (February, 1990) been transferred to the Office on Medical Assistance (OMAP), a separate entity which may serve all divisions of DHR. It is hoped that this transfer will expand PCS in order to develop services for populations currently underserved in Oregon (i.e., children, MR, MI). PCS is already being used to supplement foster care for disabled children in the Children's Service Division (CSD) of DHR, and the use of these funds for children's services will probably increase.
Younger consumers and disability advocates had expressed concern that they had been marginalized by the state's primary focus on elderly people in the development of a long term care system. This was acknowledged in 1989, when the division was renamed Senior and Disabled Services (SDSD). Another table was added to the Governor's Commission representing younger consumers and disability advocates. A more substantive restructuring was begun in the fall of 1990. The "adult transfer" creates a single entry point for younger people with disabilities who prior to this point went to the AAAs and the local welfare offices. The AAAs will now serve people over 60, and Disability Service Offices will serve people under 60. People with disabilities who were receiving social services such as food stamps and cash benefits from the Division of Adult and Family Services (AFS) are being transferred to the Disability Service Offices of SDSD.
This transition was occurring at the time of the site visit, and the state faces some of the same issues in creating Disability Services Offices that they did in creating Senior Services Offices. The roles and expectations of the AAAs, the Adult and Family Services, and the new Disability Service Offices are still being defined. There are logistical problems and philosophical conflicts inherent in the restructuring process, and these have disrupted SDSD services. Nursing home placements have gone up in the past few months, and this is being attributed to new clients being "lost in the shuffle." The SDS is also discovering that 27% of their new clients are eligible for other community-based services, and are bracing for a jump in their caseloads for these services.
Eligibility may be determined by either the AAAs or Disability Service offices. SDSD administrators say there is a general policy of assessing the total needs of the person, and then piecing together an individual package of services which addresses those needs. A single instrument is used, the Client Assessment and Planning System (CAPS). Income, assets, living situation, medical history, current support system, and functional limitations are all assessed. Special financial workers are responsible for determining financial eligibility and fee scales for benefits. If the applicant meets income eligibility requirements (<100% of SSI), needs assistance with at least one ADL, lives at home, and is determined to need low or intermittent amounts of skilled PAS, PCS will be offered.
The CSD caseworkers offering PCS reimbursement to foster parents do not use this system, but rather complete a special rate/personal care service authorization to add to the foster care agreement. An RN does a detailed assessment of medical and functional needs.
Based on the CAPS assessment SDSD clients are ranked in terms of severity of need, and services are allocated based on this ranking. People at the bottom of the list currently receiving services may be bumped if higher need cases are added. For CSD clients, the RN assessment results in a detailed plan of care which specifies the child's needs and the hours allocated to deal with those needs.
Case management is offered through the SDSD and CSD offices. Case managers are civil servants, and must have a Bachelor's degree in the behavioral sciences. SDSD caseworkers have average caseloads of roughly 120 people, and are required to do in home visits every 6 months. Agency RNs may assume some case-management functions for PCS recipients. Some private agency administrators and advocates expressed concern that there is an over reliance on state workers in the current system, that some caseworkers are poorly trained, and that caseworkers are underpaid and overworked.
RN supervision is required every 60 to 180 days for PCS provided through SDSD, and at least every 180 days for CSD clients. The consumer's physician must reauthorize services annually.
Personal care is rarely provided on a daily basis for SDSD clients. Most PCS consumers receive 4 to 7 hours of PAS per week. People with extensive needs will be placed into either the waiver programs or some sort of residential program.
The CSD has set maximum monthly hours for different types of services, i.e., 100 hours/month for ADL tasks, 100 hours/month for supervision, 15 hours/month for night-time care, 100 hours for delegation of nursing procedures, etc.
Because of the Nurse Delegation Act and because CNAs are used to provide PCS with RN supervision, many paramedical services can be provided (including external Catheter and colostomy care, medications, and respiration). More skilled or invasive procedures are provided by home health aides. Service limits preclude daily provision of such tasks under PCS.
Extensive paramedical services are offered through CSD. Up to 100 hours of "delegation of nursing procedures" per month may be authorized by CSD caseworkers. The Oregon State Health Division has developed two Pediatric Nursing Procedure manuals, which detail the provision of the 30 clinical procedures which can be delegated.
Because hours are so limited, PCS is not a viable source of respite services for SDSD clients. There is an emergency authorization process, so PCS may be used in emergencies by SDSD.
Emergency and respite services are not explicitly listed as reimbursable personal care by CSD, but "standby assistance/intensive behavioral supervision" could be made available for emergency or respite needs of children.
Basic housekeeping tasks necessary for consumer health and safety can be provided by PCS. In practice, personal care is too costly to provide ongoing housekeeping services. PCS can be supplemented by waiver funds, so independent providers can be used for housekeeping.
CSD reimburses for "household assistance essential to the child's health and comfort", which may cover some homemaker services.
Supervision, specifically "care of confused, mentally or physically disabled clients" is defined as a personal care service by SDSD. Because PCS is generally not offered daily, it is not sufficient for people with higher supervision needs.
Up to 100 hours per month of "behavior management and supervision" as well as up to 15 hours of "intensive behavioral supervision" may be authorized by CSD caseworkers.
PCS funding is not used by SDSD for adult foster care and other residential programs. PCS is limited to individual homes, and assistance "to and from necessary appointments."
For CSD, personal care is used for foster care placement of disabled children. Provision of services is not necessarily limited to the home: supportive services such as "travel and shopping to meet the child's health care, nutritional, educational, and recreational needs" are covered.
Recruitment is done by contract agencies. Agencies say the low state reimbursement makes recruitment difficult.
Screening is done by contract agencies.
Interviewing is done by contract agencies.
Attendants for PCS must be certified nursing assistants.
Hiring is done by contract agencies.
The state offers a 120 hour CNA training program.
Contract agency RNs are responsible for attendant supervision.
Attendant payment is done by contract agencies.
Attendant termination is done by contract agencies.
SDSD caseworkers as well as agency RNs may be called in to address conflicts between attendants and consumers.
SDSD considers its caseworkers to be consumer advocates. The Oregon Disabilities Commission (ODC), a consumer controlled (by law, at least half of the commissioners must have a disability) agency reporting directly to the governor, runs a toll free hotline for consumer complaints. Independent living centers and other disability organizations may provide consumer advocacy in some cases.
Some SDSD/Voc. Rehab. consumers may receive training through independent living centers, but this is not a regular component of PCS.
The centralization of services currently taking place through the adult transfer is also performing an outreach function. New people are being informed of in-home services, including PCS, for which they may be eligible.
Periodic on-site monitoring is conducted by SDSD. SDSD also does a client satisfaction survey. The ODC also follows up on complaints that come through their hotline.
SDSD clients who wish to use family providers would be transferred from PCS to the waiver programs. SDSD generally does not allow the spouse or parent of minor to be designated as a provider, although new legislation now allows for spousal pay in some circumstances paid for by the state general fund.
CSD allows reimbursement of foster parents, but natural and adoptive parents, step parents, siblings, step-siblings, and grandparents cannot receive PCS reimbursement for PAS provision. A separate state-funded program apparently does reimburse some family providers.
Wages for PCS attendants used by SDSD vary between private agencies, but they receive an average of $6-7 per hour. Foster parents in the CSD program receive approximately $5 per hour for providing personal care.
Private agencies under contract with SDSD offer FICA, worker's compensation, and unemployment compensation for their CNAs. No benefits are offered by CSD to foster parents through PCS.
Oregon has a high worker's compensation rate, which has impacted the overall employment cost for PCS. Private agency administrators complain that the SDSD reimbursement rate is too low to offer additional benefits, and consequently they have difficulty recruiting and retaining qualified attendants. Employer based health insurance will be mandated in 1994. Private agencies have insurance for negligence.
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.
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."
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.
Department of Human Resources
Division of Senior and Disabled Services:
Office of Medical Assistance Programs:
Oregon Disabilities Commission:
Service Providers:
SDSD Consumers:
Access Oregon:
United Cerebral Palsy:
Administrative Agency: Massachusetts Department of Public Welfare
Date of Site Visit: January 21 to January 25, 1991
Personal Care Assistance (PCA) is administered by the Massachusetts Department of Public Welfare (DPW). It served 1,775 people in 1990, at a total cost of $24,531,262. The program utilizes independent providers, and services are coordinated through nine PCA agencies, six of which are independent living centers (ILCs). There is an emphasis on consumer control and consumer training. Recipients meet income eligibility through either regular income limits or through the state's Medicaid buy-in, and require at least 10 hours of ADL assistance per week, or 14 hours of ADL and IADL assistance.
The program goal is "to enable people with permanent or chronic disabilities to live in the community who might otherwise be institutionalized." The program serves primarily younger people (over 90% of consumers are under 65) with physical disabilities who are capable of self management. There is an explicit commitment to consumer control, and program recipients expressed high levels of satisfaction with program services. Changes in program guidelines promulgated in 1988 allowed PCA services under the management of a consumer designated surrogate for people with mental retardation, but this population makes up only a small percentage of PCA recipients.
In the early 70s, Title XX funded homemaker services were provided through the Executive Office of Elder Affairs and through the Department of Social Service. Administrators in the Massachusetts Rehabilitation Commission (MRC), who were strongly influenced by the early independent living movement, began to develop transitional living programs incorporating the consumer control philosophy of independent living. They gradually moved from housing and traditional rehabilitative services to independent living and peer support. The Boston Center for Independent Living (BCIL) developed out of one of these transitional living programs. Nine other independent living centers were subsequently developed, one from a transitional living program and others which started as advocacy and peer support centers.
In 1976, the MRC had recognized the need for PAS so that people could move into their own homes and apartments, and negotiated with the state Medicaid office to access funds for PAS. Massachusetts added personal care to the state Medicaid plan, but because PCA was such a small part of the budget and the MRC was already involved, the state Medicaid office did little in the way of oversight. This hands-off approach to the program by the state Department of Public Welfare (DPW) has continued, although the state now faces federal pressure to change this relationship. Independent living centers were given the option of adding the PCA program to their service package, and currently six of the ten have done so.
For twelve years the PCA program had no formal regulation or oversight, only a set of guidelines which the ILCs adapted to fit their own community and organizational structure. It almost exclusively served adult wheelchair users who needed 14 or more hours of assistance with IADLs and ADLs. As the program expanded, lack of regulation led to inconsistencies in the administration and coordination of services. Concern also grew among representatives of other disability groups (notably ARC), because the services were limited to people with physical disabilities in areas served by ILCs. This led to increasing pressure on the DPW to define and expand the program.
The DPW responded by formally creating a PCA task force, composed of ILCs as well as representatives of other disability groups, (such as the DD Council, UCP, and ARC) to develop program regulations and iron out how people with mental retardation could be served by a program originally designed as an extension of a physical disabilities rehabilitation. The first regulations were promulgated by the Task Force in October, 1988.
The new regulations defined eligibility far more broadly, including children, and people whose disability did not require a wheelchair. A key issue addressed by the PCA regulations was the inclusion of people with cognitive disabilities who are not able to self-manage all aspects of PCA services. It was expected that the Department of Mental Retardation (DMR) would fund the additional support services needed, and the DPW would fund the PCA portion. The new consumers would be served through something broadly defined as "the surrogacy model", which involved people other than the consumer in PAS management. The new regulations defined the surrogate as "the consumer's legal guardian, a family member, or any other person identified in the personal care service plan to be responsible for performing certain PCA management tasks the consumer is unable to perform. These PCA management tasks may include hiring, firing, supervising and otherwise directing the PCA ... A consumer's surrogate cannot also be his PCA."
Many administrators and advocates in the ILCs had (and continue to have) both philosophical and practical objections to the surrogacy model. They expect the administrative resources required for the surrogacy model to be considerably higher than for self-managing consumers. Surrogates are seen as incompatible with the goals of the independent living movement: by including surrogates, particularly paid service professionals such as case managers, the primary goals of self-determination and personal choice seem endangered. Moreover, some ILC administrators and advocates claim that the service provider functions threaten to overwhelm the advocacy function of the ILCs. By agreeing to include surrogates, ILCs will be even further committed to the business of service provision. Several ILCs discussed the possibility of getting out of the PCA program altogether. Responding to this possibility, the new regulations allow for designation of local nonprofit agencies as PCA program coordinators in areas where the ILCs refused to offer surrogacy.
The 1988 regulations were promulgated during "the Massachusetts miracle", a period of unprecedented economic growth that was nationally publicized in the presidential campaign of Governor Dukalds. An economic decline and a new Republican administration have dramatically changed that climate. The implementation of these regulations and addition of new PCA agencies was delayed, due in part to economic crisis, administrative intransigence, and political infighting among disability groups and among state agencies. During and after the promulgation of the 1988 regulations, some developmental disabilities (DD) advocates became increasingly frustrated with the pace at which the surrogacy model was being implemented, and in 1990 threatened the DPW with a lawsuit if concrete measures were not taken to include people who needed surrogacy.
The worsening budget crisis intruded into this already complicated process. The social service system in general, and the Medicaid budget in particular, were considered to be out of control. The DPW came under intense political pressure to cut costs. Restructuring and a general reduction of administrative personnel led to a loss of practically all administrators involved in any way with the PCA task force and the development of the 1988 regulations. Advocates say that the new administrators' lack of experience and understanding of the political and historical context of the PCA program and constituency it served have led created some friction between many advocates and the DPW administration.
The DMR was facing similar political and economic pressure, and began to cut services. This caused DD advocates to intensify their demands that the surrogacy model be implemented quickly, so that recipients losing DMR services could receive at least some support through the PCA program. Not surprisingly the DPW resisted adding a new population to its already bulging caseloads in the current fiscal climate. Fearing "the woodwork effect", the DPW estimated the potential cost of instituting the surrogacy model, and concluded that there was a possibility that the program expenditures could jump from $25 to $100 million. DD advocates consider the methodology for this estimate very suspect. It included the waiting list of MRC head injured population, the MR waiting list, the waiting list for other people with developmental disabilities (e.g. people turning 22 and no longer eligible for special education), and people in mental hospitals. Based on these figures, the DPW predicted they would add 2500 to 5000 new people to the PCA program at a cost of $75-$100 million. Consumer groups felt that this estimate was quite exaggerated, because it counted people who probably don't need PAS.
In the Spring of 1990, new DPW administrators drafted their own set of PCA program guidelines which contained costs by limiting eligibility and services. Proposals were drafted which suggested limiting eligibility to those who are eligible for SNFs, limiting eligibility to those at risk of institutionalization, instituting a 40 hour per week service cap, and narrowing the scope of reimbursable services. As word of these proposals spread, there was a swift consumer backlash. Some recipients threatened to commit suicide. An emotional public forum with consumers and DPW administrators was organized by members of the PCA task force. This meeting and other political pressures led the DPW to withdraw these proposals.
Between 1988 and January of 1990, there were 16 applications by potential "Personal Care Agencies" which would offer the surrogacy model of service provision, but none had been officially approved during this period. Two ILCs began to offer surrogate services, another started to offer surrogate services but then withdrew. The PCA task force began to review applications for new providers, and by August 1990 the committee had developed a criteria list. A number of home health agencies are considering applying to be providers, but they need to demonstrate a sensitivity to independent living and be able to meet consumer control goals. Two new personal care agencies were recently approved, but at the time of the site visit they were still waiting for reimbursement rates to be set by the state Rate Setting Commission.
The DPW has recently appointed a full time administrator of the PCA program, but the department as a whole seems to remain reluctant to facilitate any program development. DPW officials acknowledge that people with mental retardation and people with AIDS could benefit from PCA services, and plan to work with these groups to develop new PCA agencies.
The ILCs continue to be divided over the surrogacy issue. The ILCs also, face a divisive struggle over the issue of attendant withholding. A recent IRS decision makes the ILCs responsible for assuring that FICA is paid on reimbursements for independent providers. Regardless of how the situation is resolved, additional administration and paperwork will increase the ILC's role in PCA service delivery (a role to which many ILC advocates object).
Income eligibility is determined by the DPW. People with disabilities may become eligible for PCA services through meeting regular income eligibility requirements, 102% of poverty level. A spend down option for income eligibility is also available; the difference in the recipient's monthly income and financial eligibility guidelines can be deducted from the monthly PCA reimbursement, and the consumer can pay the difference to the PCA out of pocket. People eligible for 1619B do not pay a contribution in order to access Medicaid, but receive Medicaid services at no cost.
Two state-funded programs also offer PCA services to people who don't meet regular Medicaid income eligibility. Some working MRC clients are also receiving PCA services through the ILCs, but intake to this program has been closed. Massachusetts also offers a Medicaid buy-in (Commonhealth Extra) for people of all incomes with disabilities as part of the state's Medicaid services. There is no asset cap for Cornmonhealth Extra, and an individual may purchase a full or supplemental premium.
PCA agencies do an initial intake for PCA, then refer to a nurse and occupational therapist who are either PCA agency employees or independent contractors. The RN and OT conduct an in- home assessment of functional limitations. Eligible recipients must need a minimum of 10 hours of assistance with ADLs per week, or 14 hours of ADLS and IADLs per week. The consumer must also have a condition which is "permanent or chronic in nature."
The PCA prior approval coordinator at the ILC mails a copy of the functional evaluation to the consumer's physician for signing. The physician's authorization must be returned before the ELC forwards the evaluation to the prior authorization unit of DPW. Services may begin immediately after the PCA agency requests prior approval (although the DPW usually takes about three weeks to give formal approval).
The OT and RN allocate hours based on functional limitations using a standardized formula. Deviations from this allocation formula must be documented. Questionable hour allocations may lead to a denial of prior authorization. When the consumer is living with family, the family is responsible for provision IADLs when possible. When a consumer is living with other program recipients, PCA time for homemaking tasks must be split among all consumers in the household.
Fundamentally, the PCA program trains consumers to be their own case managers. Medicaid pays for extensive consumer training by the ILCs, but there is no mandated contact between the ILCs and the consumer after training has occurred. The ILCs have resource coordinators or service coordinators paid by the MRC. The qualifications of such staff are based upon knowledge, skills, and ability not education.
In 1989, PCA services began to be used for as part of the service package for people who were hospitalized (e.g. people with AIDS). A special case management unit was developed for these high cost cases.
Services must be prescribed by a physician. An RN must do a home assessment at least once a year. The low level of medical supervision was singled out by HCFA as a flaw of the program, but consumers and advocates think that the present system is non-intrusive and cost-effective. Because of this criticism, the state is considering increasing RN supervision to at least twice yearly.
There are no explicit service limits for the PCA program, and a number of clients with severe disabilities receive 24 hour services. Some high need consumers complain that reimbursement for night attendants is unreasonably low, but advocates and administrators generally view the service allocation as adequate for the majority of consumers.
Paramedical services are allowed through the PCA program. Consumers are trained in "personal health care maintenance" and "emergency management", as well as how to train and manage attendants. ILCs may contract with RNs for individual instruction on specific medical conditions. It is assumed that people with this level of training will be able to train and supervise their own attendants to perform the PAS tasks they require, including paramedical tasks. The inclusion of people who are not capable of self-management may complicate this and other aspects of the current service delivery system.
There is no programmatic resource for consistent provision of emergency and respite services, although PCA regulations require that the PCA agencies maintain a current list of emergency attendants. Consumers are encouraged to recruit their own back-up attendants.
Housekeeping is part of the service plan of most PCA recipients. If the consumer lives with family, they are required to do all or most housekeeping whenever possible.
Supervision is not a PCA service, but inclusion of the surrogacy model will extend PCA services to people with cognitive disabilities as well as physical disabilities; people who only need supervision will remain excluded from the program according to the present regulations.
The surrogacy model attempts to maximize consumer control, by making the recipient responsible for as many aspects of PCA management as is possible. Several ILCs limit services to people with a family member or significant other that could be the equivalent of a conservator. The cognitively disabled consumer and his/her surrogate are trained through the ILC, like the other consumers in the PCA program.
The inclusion of people without family networks to play the surrogate role who would need to rely on professionals (i.e., caseworkers, adult foster care workers) has only been done on a demonstration basis in a pilot run by UCP called the Options program in Tauton, Massachusetts. The Center for Humanistic Change in Western Massachusetts has also been approved to provide this surrogacy model. These surrogates would be funded by the Department of Mental Retardation (DMR).
The surrogacy concept remains controversial among some of the ILCs. Concerns involve not only the philosophical contradiction between surrogacy and the central tenants of independent living, but more programmatic administrative dilemmas: