POLICY ANALYSIS SERIES ISSUES RELATED TO WELSCH V. LEVINE /NO. 21 SUMMARY AND ANALYSIS OF MINNESOTA DEVELOPMENTAL DISABILITIES RESPITE CARE DEMONSTRATION PROJECTS (Federal Fiscal Years 1981-1983) Contents I. Introduction 1 II. Review of Literature 2 III. Methodology 2 IV. Results 2 V. Discussion 13 VI. References 14 Appendix A 16 Appendix B 51 1. INTRODUCTION This paper is a continuation and conclusion of the discussion about respite care services that was initiated in Policy Analysis Paper No. 20: Respite Care: A Supportive and Preventive Service for Families. The primary purpose of this paper is to present a summary and analysis of the respite care demonstration projects that were funded by the Minnesota Governor's Planning Council on Developmental Disabilities over a three-year duration (federal fiscal years 1981 through 1983--October 1, 1981, through September 30, 1983). In 1980, the Minnesota Governor's Planning Council on Developmental Disabilities selected alternative community living arrangements as its first priority of activity for it's three-year State Plan (1981). The specific objective within this federal priority area was to demonstrate creative alternatives to out-of-home placements by encouraging the development of respite care services throughout the state. Such services were viewed as a means for providing support to families, which could possibly prevent or forestall placement of developmentally disabled persons into more restrictive settings, such as community or state residential facilities. The term "respite care" has been defined in many different ways with little general agreement. Salisbury and Griggs (1983) offered the DEVELOPMENTAL DISABILITIES PROGRAM MINNESOTA STATE PLANNING AGENCY 201 CAPITOL SQUARE BLDG. 550 CEDAR STREET ST. PAUL, MN 55101 612/296-4018    Policy Analysis Paper #21 October 24, 1983 Page 2 following definition of respite care: ...planned or emergency care provided to the disabled individual, in or out of the home, for the purpose of providing relief to the family from the daily responsibilities of caring for a developmentally disabled family member. Such services should be delivered by trained providers and should occur within the context of a coordinated service network. (p. 51) The mechanism used for developing alternative models of respite care services in Minnesota was through the demonstration grant program that was administered by the Developmental Disabilities Program of the State Planning Agency. Sixteen respite care projects were funded during a three-year period. Nine projects were funded for two years, and four projects were funded for each of the three years. Among the latter (of the three-year projects), one project was administratively transferred to another agency (In-Home Respite Care for Autistic Persons) but is counted as a single project in this report. Details about each project are included in Appendix A. The summary and analysis of projects funded in fiscal year (FY) 1983 covers only the first nine months (October 1, 1982, through June 30, 1983). II. REVIEW OF LITERATURE Policy Analysis Paper No. 20 presented both a review of literature and discussion of other resources developed throughout the United States on respite care. The reader is referred to that paper for a discussion of respite care literature. III. METHODOLOGY One of the primary purposes of this paper is to provide a summary description of the respite care projects that were demonstrated over a three-year duration in Minnesota. The following sources of information were used: (1) the initial project proposals; (2) quarterly and final reports; (3) correspondence; (4) summaries of site visits; and (5) telephone discussions with project directors to clarify information or to collect missing data. The information was collected and categorized into a common format which is presented in Appendix A. IV. RESULTS The results section will be presented in the following order: (1) funding of respite care demonstration projects; (2) number and ages of people served; (3) number of respite care providers trained and/or employed;(4) variety of respite care options demonstrated; and (5) geographic distribution of respite care projects.l Policy Analysis Paper #21 October 24, 1983 Page 3 A. Funding of Respite Care Demonstration Projects A total of $1,001,074 was allocated over a three-year period for the purpose of demonstrating respite care services in Minnesota. Of that amount, $638,033 (64 percent) was provided by federal Developmental Disabilities dollars, and $363,o41 (36 percent) was provided as local cash and/or in-kind matching contributions provided by the grantees (see Table 1). Table 1 Total Grant Awards for Respite Care Projects (Fiscal Years 1981 through 1983) Specific allocations regarding each project are included in the information presented in Appendix A. B. Number and Apes of People Served Over the two years and nine months (October 1, 1980, through June 30, 1983), there was an approximate total of 3,630 people served by the 16 respite care projects. These figures are considered to be approximations due to the likelihood that duplication of counts occurred among the cumulative quarterly and final report figures (see Table 2). Policy Analysis Paper #21 October 24, 1983 Page 4 Table 2 Approximate Number of People Served by Respite Care Projects (Direct and Indirect Services)a (Fiscal Years 1981 through 1983) aThese are considered to be "approximate" figures since counts may be duplicated. b"Direct Services" pertains to respite care services provided directly to clients and their families. c"Indirect Services" consists primarily of information and referral services which were provided by Developmental Services Organization, Inc., St. Paul. dThis figure is somewhat skewed. It includes 219 children who participated in a respite camping program. eFiscal year 1983 includes only three quarters of reporting, i.e., October 1, 1982, through June 30, 1983. The greatest number served were those who received "indirect" services (in this case, information and referral services) from Developmental Services Organization in St. Paul. A total of 2,712 information and referral requests were handled by that agency during the demonstration period. Over half of these requests (N = 1,513) were "special" requests dealing specifically with respite care and/or residential services. The remainder (N = 1,199) were of a "general" nature. It did not necessarily pertain to respite care.  Policy Analysis Paper #21 October 24, 1983 Page 5 Approximately 918 people received direct respite care services during the demonstration period. The details on the numbers served by each project are reflected in Tables 3 and 4 and in Appendix A. The majority of people served were below age 21. This was reflected in both direct and indirect services. In 1982, 81 percent (N = 200) of the 248 individuals receiving direct respite care services, and 71 percent (N = 411) of the 612 individuals receiving indirect services were below age 21. Tables 3 and 4 describe the number and ages of people served by each project in fiscal years 1982 and 1983, respectively. (This information was not collected for fiscal year 1981.) Table 3 Number of People Served during Fiscal Year 1982 by Age Category: Direct and Indirect Respite Care Services a"Direct Services" pertains to respite care services provided directly to clients and their families. b"Indirect services" consists primarily of information and referral services provided by Developmental Services Organization (DSO), St. Paul. cThese figures reflect only the "special" information and referral requests received by DSO regarding respite care and residential services. In addition, DSO received 486 "general" requests during FY 1982 which were not broken down by ages.     Policy Analysis Paper #21 October 24, 1983 Page 6 Table 4 Number of People Served during Fiscal Year 1983 by Age Category: Direct and Indirect Respite Care Services a aFiscal Year 1983 averages were calculated over a nine-month duration, October 1, 1982, through June 30, 1983. b"Direct Services" pertains to respite care services provided directly to clients and their families. c"Indirect Services" consists primarily of information and referral services provided by Developmental Services Organization (DSO), St. Paul. dThese figures reflect only the "special" information and referral requests received by DSO regarding respite care and residential services. In addition, DSO received 387 "general" requests during FY 1983 which were not broken down by ages. C.Number of Respite Care Providers Trained and/or Employed Table 5 summarizes the number of people who were trained and/or employed by the 16 projects over a three-year period. In FY 1981, there were 267 people providing respite care in the demonstration projects funded that year. In FY 1982, there were 166 people; and in FY 1983, 212 people.   Policy Analysis Paper #21 October 24, 1983 Page 7 The significance of the figures in Table 5 can be found in the purpose and scope of each project as presented in Appendix A. For example, it can be generalized that projects training and employing the greatest numbers of respite care workers were those serving larger geographic areas (urban and rural) and providing in-home services for families and agencies. The type of setting in which respite care was provided is another noticeable variance. Group settings (such as St. David's School for Exceptional Children; Northeast Residence, Inc.; and the Developmental Learning Center, Inc.) required fewer staff than an in-home sitter/companion type of service provided by Alternatives for Autistic People/Volunteers of America--Bar-None.   Policy Analysis Paper #21 October 24, 1983 Page 8 Table 5 Number of Respite Care Providers Trained and/or Employed by Projects during Fiscal Years 1981 through 1983 aFiscal Year 1983 covers only three quarters (October 1, 1982, through June 30, 1983). bThis figure (108) contains some duplicated counts.   Policy Analysis Paper #21 October 24, 1983 Page 9 D. Variety of Respite Care Options Demonstrated Services in the home and out of the home were demonstrated by the 16 respite care projects. Several projects had a variety of care options to offer their clients (see Table 6). Eight projects provided respite care services in the client's own home. Four delivered services in the respite care provider's home and four others made arrangements for care in licensed foster homes and in licensed group homes. For details about each project, please refer to the "Project Description" section presented in Appendix A.    Policy Analysis Paper #21 October 24, 1983 Page 10   Policy Analysis Paper #21 October 24, 1983 Page 12 E. Geographic Distribution of Respite Care Projects As described earlier, an attempt was made by the Governor's Planning Council on Developmental Disabilities to fund projects throughout the state of Minnesota. Table 7 shows the distribution of respite care projects by economic development region and the number of counties served by these projects. Out of the 87 counties in Minnesota, almost half (41 counties) were served by the 16 respite care projects. The heaviest concentration of services was located in the southeastern, northwestern, and northeastern parts of the state. Table 7 Geographic Distribution of Respite Care Demonstration Projects by Region and Number of Counties Served (Fiscal Years 1981 through 1983) aA map of the Economic Development Regions in Minnesota is provided in Appendix B.  Policy Analysis Paper #21 October 24, 1983 Page 13 V. DISCUSSION The provision of temporary relief to families of developmentally disabled persons living at home, known as respite care, was demonstrated in Minnesota as one means of providing support to families. Through the combined financial support of the Minnesota Developmental Disabilities Program and local agencies, respite care services (including information and referral) were provided to a few hundred families who needed these services. The 16 demonstration projects reflected the diversity of needs, situations, and settings necessary for delivering respite care services in urban and rural settings. Most projects brought services to the family home, which the literature supports as being the most commonly preferred setting. Most families served had children below age 21 which may indicate when families experience the greatest times of stress. Although this demonstration effort did not document that the provision of respite care services actually prevented or forestalled placement of developmentally disabled children in more restrictive settings, studies in other states have documented this positive relationship (Cretney, 1982). The strong possibility of securing a more stable funding base in Minnesota through the Title XIX Medicaid Waiver creates a challenge for all policy making levels to design, develop, and implement a statewide system of family support services of which respite care can be an important part. Human service planners can build upon the experiences gained from the demonstration projects described in this report as well as from the experiences of other states. At the state level, the first major issue is the definition of "respite care"--what needs respite care can serve and what respite care options might best meet those needs must be answered. State level program designs must allow for local flexibility and autonomy. Other major steps will be 2) methods for monitoring criteria mechanisms), through a case management to establish: 1) standards for respite care, and evaluating (e.g., licensure and/or fund and 3) coordination of respite care services system. Guidelines or policies should be developed about training of respite care providers. It should be competency-based and leading toward possible certification or licensing. Rate setting standards must be developed for reasonable cost containment, but consideration must be given the salaries of respite care workers. They should be paid at a level which is respectful of the job demands. A process for local respite care developers was suggested by Salisbury and Griggs (1983) which included the following phases: (1) information gathering, (2) recruitment, (3) training, (4) coordination of the respite care network, and (5) development of an ongoing support system    Policy Analysis Paper #21 October 24, 1983 Page 14 (p. 55). However, the most critical consideration was recommended by Holmes: As a new type of service moves from an informal basis to one of increased regulation, it is especially vital to demonstrate that there is sufficient demand and utilization of the service. With ample input from the consumer (parents) in the planning process, respite programs will be better utilized. (United Cerebral Palsy Associations, 1981, p. 39) The challenge ahead for those involved in the growing respite care field was offered by Massachusetts State Senator Chester G. Atkins: The respite care movement is a very exciting thing to be a part of. It's an exciting new service that's sprung up really in some very adverse and difficult times . . . . Nevertheless, you have the opportunity to use this to begin a process of building a vision about what social services should be five years from now. Once you have that vision, the political leadership will come along. Once you have that vision, the resources will follow to make that vision a reality. (Massachusetts Developmental Disabilities Council, 1982, p. 5) VI. REFERENCES Cretney, L. Respite care and institutionalization. Madison: Division of Community Services, 1982. Massachusetts Developmental Disabilities Council. Respite care studied in Massachusetts. Boston: Author, 1978. Salisbury, C. & Griggs, P. A. Developing respite care services for families of handicapped persons. The Journal of the Association for the Severely Handicapped, Spring 1983, 8, 50-57. United Cerebral Palsy Associations. For this respite, much thanks . . . concepts, guidelines and issues in the development of community respite care services. New York: Author, 1981.    Policy Analysis Paper #21 October 24, 1983 Page 15 The Policy Analysis Series is published by the Minnesota Governor's Planning Council on Developmental Disabilities and the Developmental Disabilities Program, State Planning Agency. Richard Nelson, M.D., Council Chair--Colleen Wieck, Ph.D., Director. The purpose of this series is to enhance communication among state and local agencies, service providers, advocates, and consumers on timely issues. We encourage reader participation by giving us feedback on your ideas and perceptions. This paper may be cited: Developmental Disabilities Program. Policy Analysis Series Paper No. 21: Summary and Analysis of Minnesota Developmental Disabilities Respite Care Demonstration Projects (Federal Fiscal Years 1981-1985). St. Paul, MN: Developmental Disabilities Program, State Planning Agency, October, 1983.  Policy Analysis Paper #21 October 24, 1983 Page 16 APPENDIX A THE RESPITE CARE DEMONSTRATION PROJECTS TABLE OF CONTENTS Respite Care Agency Alternatives for Autistic People, Inc. Association for Retarded Citizens--Duluth Chisago County Welfare Department Cook County Social Services Courage Center/Camp Courage Developmental Learning Center, Inc. Developmental Services Organization, Inc. Isanti County Family Services Lakes Homes and Program Development Northeast Residence, Inc. Olmsted County Department of Social Services PLS, Inc. Ramsey County Human Services Department Region 9 Development Commission Respite Care Program--Northwest Minnesota St. David's School for Exceptional Children Volunteers of America--Bar-None 19 21 23 25 27 29 31 33 35 37 39 41 43 45 47 49  Policy Analysis Paper #21 October 24, 1983 Page 17 ALTERNATIVES FOR AUTISTIC PEOPLE, INC. FAMILY LIVING SUPPORT PROJECT: IN-HOME RESPITE CARE SERVICE FOR AUTISTIC PERSONS Neil Doughty, Acting Director Alternatives for Autistic People, Inc. 5624 73rd Avenue, North Brooklyn Park, Minnesota 55429 (612) 560-5330 Information Requests: Please direct inquiries to: Volunteers of America--Bar-None Residential Treatment Services 22426 St. Francis Boulevard Anoka, Minnesota 55303 (612) 753-2500 FUNDING Type of Funding FY 1981 FY 1982 FY 1983a Total Developmental Disabilities grant $30,784 .$28,232 $0 $59,016 Local match 8,500 13,525 0 22,025 TOTAL $39,284 $41,757 $0 $81,041 aThe administration of this project was transferred to Volunteers of America--Bar-None which received a developmental disabilities grant in FY 1983, described further under that title in this report. RESPITE CARE SERVICES PROVIDED Project Description: The primary emphasis of this project was to provide in-home respite care by qualified, competent professionals. Families could request services for a few hours, a full day (including overnight), or a weekend. Each family registered with the project was provided a listing of caregivers so that they could negotiate their own respite care arrangements. In addition, other types of services were made. available: From--he-home respite services, where the caregiver accompanied the disabled person on short trips away from the home, e.g., to do Christmas shopping and attend funerals or weddings. Special outings Saturday recreation program August day camp Emergency and crisis service Informal mailings--information about other program activities available in the community.   Policy Analysis Paper #21 October 24, 1983 Page 18 ALTERNATIVES FOR AUTISTIC PEOPLE, INC. (continued) Geographic Area Served: Region 11: Anoka, Carver, Dakota, Hennepin, Ramsey, and Washington counties. Eligibility Requirements: Children and adults with severe disabilities who resided with their families. Priority was to serve persons with autism or autistic like behavior. Fees for Service: Vouchers for service were purchased for $1.00 per hour for 2 to 8 hours, or $9.00 per day (24 hours). Number of People Served: In FY 1981, 92 people were served; in FY 1982, 73 people were served. Number of Respite Care Providers Trained and/or Employed: In FY 1981, 25 respite care providers were trained and/or employed; In FY 1982, 31 were trained and/or employed. Publications/Products: Project brochure. Ongoing Status of Project: This respite care service continues but is now administered by Volunteers of America--Bar-None, described further under that title elsewhere in this report.   Policy Analysis Paper #21 October 24, 1983 Page 19 ASSOCIATION FOR RETARDED CITIZENS--DULUTH ARROWHEAD RESPITE CARE PROJECT Janice Cohen, Executive Director Association for Retarded Citizens-- Duluth, Minnesota 55802 (218) 726-4725 Information Requests: After September 30, 1983, please contact: Marcia Herman Nat G. Polinsky Rehabilitation Center 530 East Second Street Duluth, Minnesota 55802 (218) 727-5083 FUNDING Type of Funding Developmental Disabilities grant Local match TOTAL RESPITE CARE SERVICES PROVIDED Project Description: Intermittent and/or regularly scheduled respite care services were provided to persons with developmental disabilities in their own homes or in the homes of respite care providers. These services were designed to provide relief to families as a break from constant care and supervision of a disabled member and to assist in times of crises and emergencies, or to allow for travel or vacations for the parents. Part-time coordinators were located in Duluth, Itasca County, the Iron Range, and Carlton County. A minimum of 8 hours of preservice training was provided for respite care providers. Information about the project and technical assistance was provided to other parts of the country, e.g., New York, Texas, and North Dakota. Geographic Area Served: Duluth; Grand Rapids; Iron Range (Virginia, Eveleth, and Hibbing); and Carlton County.  Policy Analysis Paper #21 October 24, 1983 Page 20 ASSOCIATION FOR RETARDED CITIZENS--DULUTH (continued) Eligibility Requirements: Children and adults with developmental disabilities living at home. Use of service was limited to 90 days per year and no more than 15 consecutive days at a time. Fees for Service: Amount of payment by family was negotiated with the respite care provider in a written agreement. Suggested rates: $2.00 per hour for the first 8 hours; $1.00 per hour for 8 to 24 hours with maximum of $25.00 per 24-hour period. Number of People Served: In FY 1982, 25 people were served. During the first three quarters in FY 1983, 16 people were served. Number of Respite Care Providers Trained and/or Employed: In FY 1982, 14 respite care providers were trained and]or employed; during the first three quarters in FY 1983, 36 were trained and/or employed. Publications/Products: Slide/tape presentation. "Respite Care Manual; Program Operations and Policies" (February, 1982). "Training Curriculum for Respite Care Providers." Public service announcements for TV and radio. "Happenings"--15-minute tape for TV show. Ongoing Status of Project: As of October 1, 1983, this respite care project will be transferred to the Nat G. Polinsky Rehabilitation Center. Also, the Junior League of Duluth will be cooperating by providing volunteers, training, and other services. Continuation efforts in Carlton County, Itasca County, and the Iron Range are still in process.   Policy Analysis Paper #21 October 24, 1983 Page 21 CHISAGO COUNTY WELFARE DEPARTMENT CHISAGO COUNTY RESPITE CARE PROGRAM Chisago County Welfare Department Chisago County Courthouse Center City, Minnesota 55012 Information requests: Please direct inquiries to: Nancy Knowland, Project Director Chisago County DAC (vendor agency) Box 410 Chisago City, Minnesota 55013 (612) 257-6709 FUNDING Type of Funding FY 1981 FY 1982 FY 1983 Total Developmental Disabilities grant $0 $ 5,000 $ 7,500 $12,500 Local match o 3,772 2,150 5,922 TOTAL $0 $ 8,772 $ 9,650 $18,422 RESPITE CARE SERVICES PROVIDED Project Description: Out-of-home respite care services were provided to developmentally disabled residents of Chisago County. Respite care placements were made in certified respite care homes or licensed foster care homes, where care providers received special training. Both short-term (a few hours) and long-term (for several days) placements could be arranged. Respite care services were used for the following reasons: (1) extended parent vacations; (2) breakaway respite for disabled adults; (3) free time for parents to pursue outside interests (e.g., night school, employment, and expanding social contacts); and (4) temporary transition placement prior to placement in foster homes. In response to an advertising campaign for recruitment of respite care providers, 56 new applications were received, and 15 new homes were certified. Geographic Area Served: Chisago County only. Eligibility Requirements: Children and adults with developmental disabilities who reside in their own homes.  Policy Analysis Paper #21 October 24, 1983 Page 22 CHISAGO COUNTY WELFARE DEPARTMENT (continued) Fees for Service: Sliding fee scale ranging from $1.25 to $25.00 per day. No one is denied service due to inability to pay. Number of People Served: In FY 1982, 10 people were served; during the first three quarters in FY 1983, 16 were served. Number of Respite Care Providers Training and/or Employed: In FY 1982, 18 respite care providers were trained and/or employed; during the first three quarters in FY 1983, 12 providers were trained and/or employed; a total of 30 respite care workers. Publication/Products: Respite Care Training Manual (1982 and 1983, revised). Project brochure. Fact sheets for providers and parents. Ongoing Status of Project: The Chisago County Welfare Department plans to continue this project after the developmental disabilities grant terminates on September 30, 1983. The Chisago County DAC will continue to serve as the vendor agency.   Policy Analysis Paper #21 October 24, 1983 Page 23 COOK COUNTY SOCIAL SERVICES RESPITE CARE PROJECT Thomas Hustvet, Director Cook County Social Services Grand Marais, Minnesota 55604 (218) 387-2282 Information Requests: Direct future inquiries to: Cook County Social Services Grand Marais, Minnesota 55604 (218) 387-2282 FUNDING Type of Funding FY 1981 FY 1982 FY 1983 Total Developmental Disabilities grant $0 $0 $ 6,888 $ 6,888 Local match o 0 2,296 2,296 TOTAL $0 $0 $ 9,184 $ 9,184 RESPITE CARE SERVICES PROVIDED Project Description: This project was newly funded in October, 1982. Respite care was provided in the home where developmentally disabled children and adults lived or in the homes of respite care providers. A part-time coordinator was hired, 20 respite care providers were recruited and trained, and 4 families have utilized these services. Geographic Area Served: Cook County. Eligibility Requirements: Children and adults with developmental disabilities who reside in their own homes. Fees for Service: Fees were negotiated with the respite care provider. The suggested fee is $2.00 per hour. Low income subsidy is available. Number of People Served: Four children and adults were served during the first three quarters in FY 1983 with a total of 525 hours of care provided.    Policy Analysis Paper #21 October 24, 1983 Page 24 COOK COUNTY SOCIAL SERVICES (continued) Number of Respite Care Providers Trained and/or Employed: Twenty providers were trained in FY 1983 over a nine-month period through March. Publications/Products: Training curriculum (revision in process). Project brochure. Ongoing Status of Project: The goal is to eventually have this program be self-sufficient after its effectiveness has been demonstrated. Tentative plans are being made to expand the project to include services to elderly, handicapped citizens.   Policy Analysis Paper #21 October 24, 1983 Page 25 COURAGE CENTER/CAMP COURAGE WINTER CAMPING ALTERNATIVES Bob Pollen Courage Center/Camp Courage 3915 Golden Valley Road Golden Valley, Minnesota 55422 (612) 588-0811 Information Requests: Requests regarding camping experiences and other services may be directed to: Courage Center/Camp Courage 3915 Golden Valley Road Golden Valley, Minnesota 55422 (612) 588-0811 FUNDING Type of Funding FY 1981 FY 1982 FY 1983 Total Developmental Disabilities grant $23,038 $0 $0 $23,038 Local match 7,679 0 0 7,679 TOTAL $30,717 $0 $0 $30,717 RESPITE CARE SERVICES PROVIDED Project Description: This project made available year-round camping experiences for handicapped children and adults. Nineteen homebound, handicapped adults participated in a week-long winter camping experience at Camp Courage. Two hundred children with handicaps were provided with weekend and overnight camping throughout the year. Geographic Area Served: Region 11 (metro) and St. Cloud area. Eligibility Requirements: Children and adults with handicaps residing in their own homes. Fees for Service: The registration fee was $10.00. Number of People Served: A total of 219 children and adults with handicaps were served.    Policy Analysis Paper #21 October 24, 1983 Page 26 COURAGE CENTER/CAW COURAGE (continued) Number of Respite Care Providers Trained and/or Employed: Staff members (paid and volunteers) totaling 108 were employed. (This figure includes some duplication of head counts.) Publications/Products: None. Ongoing Status of Project: Rather than a full week of winter camp, a three-day midweek camp has continued for homebound adults. Full year overnights for children continue. There is extensive use of volunteers.   Policy Analysis Paper #21 October 24, 1983 Page 27 DEVELOPMENTAL LEARNING CENTER, INC, RESPITE CARE PROGRAM James McCaul, Director of Early Intervention Developmental Learning Center, Inc. 750 South Plaza Drive Mendota Heights, Minnesota 55120 (612) 454-2732 Information Requests: Although respite care services have been discontinued, people may contact Developmental Learning Center, Inc., regarding day programs and for other information about Dakota County services. FUNDING Type of Funding FY 1981 FY 1982 FY 1983 Total Developmental Disabilities grant $38,920 $0 $0 $38,920 Local match 9,785 0 0 9,785 TOTAL $48,705 $0 $0 $48,705 RESPITE CARE SERVICES PROVIDED Project Description: This was a center-based respite care service that was made available during the day (weekdays) and one evening per week over an eleven month period. The service was located at Christ Evangelical Lutheran Church in Eagan. Three staff members consisted of one teacher, a teacher assistant, and a child-care assistant. Out of 28 families registered with the program, 20 actually used the service. Services were available on a regularly scheduled basis, or for drop-in and emergency situations. Geographic Area Served: Metropolitan area. Eligibility Requirements: Developmentally delayed infants and preschool children. Fees for Service: Sliding fee schedule with range from $0.25 per hour to $1.75 per hour. Number of People Served: Twenty-three families/children were served with a total of 2,523 hours of services provided.   Policy Analysis Paper #21 October 24, 1983 Page 28 DEVELOPMENTAL LEARNING CENTER, INC. (continued) Number of Respite Care Providers Trained and/or Employed: Three respite care providers were trained and/or employed. Publications/Products: Project brochure. Manual for families. Priority for emergency service. Ongoing Status of Project: Project was terminated upon completion of the grant year.    Policy Analysis Paper #21 October 24, 1983 Page 29 DEVELOPMENTAL SERVICES ORGANIZATION, INC, RESPITE CARE SERVICES SYSTEM Jane W. Birks, Executive Director Jennifer Otto, Project Staff Developmental Services Organization, Inc. 666 Pelham Boulevard St. Paul, Minnesota 55114 (612) 646-1970 Information Requests: Direct inquiries to: Developmental Services Organization, Inc. 666 Pelham Boulevard St. Paul, Minnesota 55114 (612) 646-1970 FUNDING Type of Funding FY 1981 FY 1982 FY 1983 Total Developmental Disabilities grant $43,406 $24,000 $27,000 $ 94,4o6 Local match 10,852 10,288 11,372 32,512 TOTAL $54,258 $34,288 $38,372 $126,918 RESPITE CARE SERVICES PROVIDED Project Description: The purpose of this grant was to generate a respite care program throughout the metropolitan area. A major part of this system has been to operate an information clearinghouse, connecting people with the particular type of service(s) they need. It provided an in-depth information and referral service regarding respite and residential care as well as responds to other requests for information. An up-to-date computerized inventory of services was maintained, including where there were openings available in respite and residential services. Information was distributed by telephone (with a 24-hour answering service) and computer print-outs were sent to consumers and providers upon request. Developmental Services Organization, Inc., also had an outreach component which was intended to encourage the expansion and improvement of respite care services, e.g., the recruitment of respite care providers. Public relations efforts emphasized greater public awareness about the availability of many types of respite and residential services. The involvement of 50 sitters/companions were also incorporated into the project. Geographic Area Served: Region 11: seven-county metropolitan area.   Policy Analysis Paper #21 October 24, 1983 Page 30 DEVELOPMENTAL SERVICES ORGANIZATION, INC. (continued) Eligibility Requirements: Consumers and providers needing information about respite care services, residential, and other related services available in the metropolitan area. Fees for Service: Free. Number of People Served: FY 1983 Type of Request FY 1981 FY 1982 (3 qtrs.) Total Special requests 256 612 645 1,513 General requests 326 486 387 1,199 TOTAL 582 1,o98 1,032 2,712 Publications/Products: Developmental Services Organization, Inc., flyer/brochure (8,600 distributed in 1981-82). Slide presentation. Computer print-outs (8,200 distributed in 1981-82). " Family subsidy information sheet. Public service announcements (radio and TV). Numerous news releases for local newsletters and newspapers. Ongoing Status of Projects: Plans are to continue the service after the developmental disabilities grant terminates on September 30, 1983.  Policy Analysis Paper #21 October 24, 1983 Page 31 ISANTI COUNTY FAMILY SERVICES ISANTI COUNTY COMMUNITY SUPPORT PROJECT Marina Vork Isanti County Family Services 221 Southwest 2nd Avenue Cambridge, Minnesota 55008 (612) 689-1711 Information Requests: Direct inquiries to: Isanti County Family Services 221 Southwest 2nd Avenue Cambridge, Minnesota 55008 (612) 689-1711 FUNDING Type of Funding FY 1981 FY 1982 FY 1983 Total Developmental Disabilities grant $0 $17,000 $0 $17,000 Local match o 5,170 0 5,170 TOTAL $0 $22,170 $0 $22,170 RESPITE CARE SERVICES PROVIDED Project Description: The purpose of the Community Support Project was to encourage developmentally disabled adults to live more independently in their own homes or in apartments by providing periodic training and counseling. Staffing for the project was provided under subcontract with Brighter Day Residence, Mora, Minnesota. As a result of the project, five people with developmental disabilities improved in the areas of independent living skills and social skills. Thus, there was an indirect reduction of stress on other family members (such as aging parents) as well as placements in more restrictive types of settings were avoided. Geographic Area Served: Isanti County (Cambridge area). Eligibility Requirements: Adults with developmental disabilities, including chronic mental illness, who needed to improve in the area of independent living. Fees for Service: None.   Policy Analysis Paper #21 October 24, 1983 Page 32 ISANTI COUNTY FAMILY SERVICES (continued) Number of People Served: Five persons with chronic mental illness and/or mental retardation were served. Number of Respite Care Providers Trained and/or Employed: Professional staff provided by Brighter Day Residence in Mora, Minnesota. Publications/products: None. Ongoing Status of Project: This project was extended through September 30, 1983. Plans are to continue the project after that date.    Policy Analysis Paper #21 October 24, 1983 Page 33 LAKES HOMES AND PROGRAM DEVELOPMENT LAKES HOMES RESPITE CARE Thomas Reifenberger Lakes Homes and Program Development P.O. BOX 169 Detroit Lakes, Minnesota 56501 (218) 847-7176 Information Requests: Direct inquiries to: Lakes Homes and Program Development P.O. BOX 169 Detroit Lakes, Minnesota 56501 (218) 847-7176 FUNDING Type of Funding FY 1981 FY 1982 FY 1983 Total Developmental Disabilities grant $22,014 $25,999 $22,371 $70,384 Local match 9,966 7,175 7,457 24,598 TOTAL $31,980 $33,174 $29,828 $94,982 RESPITE CARE SERVICES PROVIDED Project Description: Developmental disabilities grant monies were used to expand respite care services that had actually begun in 1977 in Detroit Lakes, Minnesota. This project provided respite care services to persons with developmental disabilities in their own homes, in licensed group homes or in the homes of care providers. Technical assistance was made available to other communities in Region 4 to develop local respite care services, where volunteer respite care coordinators were assigned the areas of: Moorhead (Clay County), Fergus Falls (Otter Tail County), and Alexandria (Douglas County). In order to acquaint prospective parents in utilizing respite care services, tours were scheduled in group home facilities. Extensive training was provided for care givers, with an average of one training session each month. Geographic Area Served: Region 4: Becker, Clay, Douglas, Otter Tail, Norman, and Polk counties. Eligibility Requirements: Children and adults with primary diagnosis of mental retardation and associated physical, sensory, or medical handicaps.   Policy Analysis Paper #21 October 24, 1983 Page 34 LAKES HOMES AND PROGRAM DEVELOPMENT (continued) Fees for Service: Sliding fee schedule, with subsidization for families through a number of funding sources, e.g. Supplemental Security Income (SS1), Title XX, Cost of Care, Medical Assistance> and the developmental disabilities grant. Number of People Served: In FY 1981, 50 people were served; in FY 1982, 66 were served. During the first three quarters in FY 1983, 43 people were served. Number of Respite Care Providers Trained and/or Employed: In FY 1981, 57 respite care providers were trained and/or employed; in FY 1982, 63 providers were trained. During the first three quarters of FY 1983, 58 providers were trained and/or employed. Publications/Products: Respite care program brochure. Respite Care Training Manual (1981, 1982, and 1983). Ongoing Status of Project: Alternative funding sources are being sought in order to continue the project after the developmental disabilities grant terminates on September 30, 1983.  Policy Analysis Paper #21 October 24, 1983 Page 35 NORTHEAST RESIDENCE, INC, NORTHEAST RESIDENCE RESPITE CARE GROUP HOME Jane Wells, Director Northeast Residence, Inc. 104 Bald Eagle Avenue White Bear Lake, Minnesota 55110 (612) 426-1210 Information Requests: Direct inquiries to: Northeast Residence, Inc. 104 Bald Eagle Avenue White Bear Lake, Minnesota 55110 (612) 426-1210 FUNDING Type of Funding FY 1981 FY 1982 Developmental Disabilities grant $26,903a $0 Local match 69,677 0 TOTAL $96,58o $0 FY 1983 Total $0 $26,903a o 69,677 $0 $96,580 a Only (approximately) half of grant was utilized. RESPITE CARE SERVICES PROVIDED Project Description: A respite care group home was established to house 6 persons with developmental disabilities at any one time, located in White Bear Lake. Families were limited to use the facility for no more than 14 consecutive days and a maximum of 90 days throughout the year. The home was licensed under DPW Rule 34 and certified as an ICF-MR facility (Department of Health). The developmental disabilities grant was terminated midway in the project year, using only a portion of the grant for start-up costs. The primary reason was that the developmental disabilities grant was determined to count as income under DPW Rule 52, which would result in lowering the ongoing per diem rate for the facility. Nevertheless, the project was successfully launched and operated without the remaining grant from developmental disabilities. Geographic Area Served: Region 11: seven-county metropolitan area, plus people from elsewhere in the state of Minnesota. Eligibility Requirements: Children and adults with mental retardation who are ambulatory.   Policy Analysis Paper #21 October 24, 1983 Page 36 NORTHEAST RESIDENCE, INC. (continued) Fees for Service: Sliding fee scale. Subsidies available through county programs and medical assistance. Number of People Served: In FY 1981, 33 people were served. Number of Respite Care Providers Trained and/or Employed: There are 2 to 4 staff persons on duty at any one time, depending upon the number of clients being served and severity of their disabilities. Publications/Products: Project brochure. Slide presentation of respite care. Ongoing Status of Project: As of August, 1983, this project was still operating under its original design. Approximately 100 people have been served since it opened in April, 1981, totaling 2,500 hours of service. The facility has operated with a 96% utilization rate and usually has a waiting list for its usage. County and medical assistance continued to support the program financially.   Policy Analysis Paper #21 October 24, 1983 Page 37 OLMSTED COUNTY DEPARTMENT OF SOCIAL SERVICES DEMONSTRATION OF RESPITE CARE SERVICES IN OLMSTED COUNTY Mary Frisvold, Project Director Margaret Olk, Coordinator Olmsted County Department of Social Services Rochester, Minnesota 55901 1500 1st Avenue, Northeast (507) 285-8424 Information Requests: Please direct inquiries to: Olmsted County Department of Social Services 1500 1st Avenue, Northeast Rochester, Minnesota 55901 (507) 285-8424 FUNDING Type of Funding FY 1981 FY 1982 FY 1983 Total Developmental Disabilities grant $0 $15,000 $18,750 $33,750 Local match o 4,977 7,500 12,477 TOTAL $0 $19,977 $26,250 $46,227 RESPITE CARE SERVICES PROVIDED Project Description: This program was designed to provide both in-home respite care and care in foster respite care homes. To date, 15 foster respite care providers, and 4 in-home care providers have been recruited and trained. Training included 15 hours of preservice and 10 hours of in-service. Additional staffing included the use of 2 to 4 nursing student interns who assisted care providers with children in need of intensive care. Geographic Area Served: Olmsted County. Eligibility Requirements: Children and adults with developmental disabilities who reside in their own homes or in foster homes. Fees for Service: Sliding fee (cost-of-care) scale.    Policy Analysis Paper #21 October 24, 1983 Page 38 OLMSTED COUNTY DEPARTMENT OF SOCIAL SERVICES (continued) Number of People Served: In FY 1982, 17 children and adults were served. In FY 1983, 28 were served. Number of Respite Care Providers Trained and/or Employed: Fifteen, plus four nursing student interns. (Coordinator was a half-time position.) Publications/Products: Parent orientation film (video tape) was produced to introduce new parents to the program. Ongoing Status of Project: The Olmsted County Department of Social Services plans to continue this project after September 30, 1983, when the developmental disabilities grant terminates.  Policy Analysis Paper #21 October 24, 1983 Page 39 PLS, INC, RESPITE CARE PROGRAM Michael J.Sarafolean, Project Director PLS, Inc. 1394 Jackson Street St. Paul, Minnesota 55117 (612) 488-0275 Information Requests: Respite care services have been discontinued. FUNDING Type of Funding FY 1981 FY 1982 FY 1983 Total Developmental Disabilities grant $20,900 $0 $0 $20,900 Local match 71,100 0 0 71,100 TOTAL $92,000 $0 $0 $92,000 RESPITE CARE SERVICES PROVIDED Project Description: This project was designed to provide both in-home and out-of-home respite care for adults with developmental disabilities. This project had difficulty early in its development in that the additional local revenues anticipated did not materialize. Therefore, only a minimum amount of services were delivered. Geographic Area Served: Region 11: seven-county metropolitan area. Eligibility Requirements: Adults (ages 18 and over) with developmental disabilities. Men and women who are ambulatory, toilet trained, and possess at least some degree of self-help and personal hygiene skills. Fees for Service: This information was not provided. Number of People Served: Sixteen units of service were provided. Number of Respite Care Providers Trained and/or Employed: This information was not provided.    Policy Analysis Paper #21 October 24, 1983 Page 40 PLS, INC. (continued) Publications/products: Project brochure. Ongoing Status of Project: Discontinued at the end of the project year.   Policy Analysis Paper #21 October 24, 1983 Page 41 RAMSEY COUNTY COMMUNITY SERVICES DEPARTMENT RESPITE CARE IN RAMSEY COUNTY Kathy Thorson Jan Wulff Ramsey County Community Services Department, Foster Care Services 160 East Kellogg Boulevard St. Paul, Minnesota 55101 (612) 298-4697 Information Requests: People interested in providing respite care or receiving these services should contact Earle Hobbs, Ramsey County Community Services Department at (612) 298-4381. FUNDING Type of Funding FY 1981a FY 1982 FY 1983 Total Developmental Disabilities grant $ 35,000 $0 $0 $35,000 Local match 11,667 0 0 11,667 TOTAL $ 46,667 $0 $0 $46,667 a Project was extended over an 18-month period. RESPITE CARE SERVICES PROVIDED Project Description: The purpose of this project was to prevent foster and natural parent "burn out" by establishing 10 professional respite care foster homes. These homes were paid on a year-round basis regardless of whether or not they were filled. Providers received 12 hours of orientation and training and were issued a state license. Monthly support group meetings were made available to the 10 respite care providers. Geographic Area Served: Ramsey County. Eligibility Requirements: Children with developmental disabilities who resided in foster homes or were living with natural parents. Fees for Service: None. Number of People Served: Respite care services and foster families were provided to 66 children from 58 natural and foster families.    Policy Analysis Paper #21 October 24, 1983 Page 42 RAMSEY COUNTY COMMUNITY SERVICES DEPARTMENT (continued) Number of Respite Care Providers Trained and/or Employed: Ten licensed respite care homes. Publications/Products: Project brochure. Slide/tape presentation. Ongoing Status of Project: This project was incorporated into the ongoing foster care program.  Policy Analysis Paper #21 October 24, 1983 Page 43 REGION 9 DEVELOPMENT COMMISSION DEMONSTRATION OF RESPITE CARE SERVICES IN REGION 9 Terry Stone, Director Region 9 Development Commission P.O. Box 3367 Mankato, Minnesota 56001 (507) 387-5643 Information Requests: This project has been discontinued. Questions regarding respite care services should be directed to the county social service agency in your area. FUNDING Type of Funding FY 1981 FY 1982 FY 1983 Total Developmental Disabilities grant $25,756 $0 $0 $25,756 Local match 8,619 0 0 8,619 TOTAL $34,375 $0 $0 $34,375 RESPITE CARE SERVICES PROVIDED Project Description: This project provided a community organization approach to assist local groups to plan and implement respite care services in their respective communities. Training curriculums were developed, and seven training sessions were held for 45 respite care providers from a four-county area. A model respite care program was developed for communities to use as a guide. Geographic Area Served: Region 9 (south central Minnesota). Eligibility Requirements: Not applicable. Fees for Service: Not applicable. Number of People Served: Not applicable. Number of Respite Care Providers Trained and/or Employed: Forty-five respite care providers were trained.    Policy Analysis Paper #21 October 24, 1983 Page 44 REGION 9 DEVELOPMENT COMMISSION (continued) Publications/Products: Respite care brochure. Handle with Care: Respite Care Training (Manual), 1981. Handbook for Behavior Management (1981). Respite care Bibliography. County resource lists. Ongoing Status of Project: Project was terminated upon completion of the grant year. However, local programs continue to function, such as in Waseca New Ulm, and Mankato.    Policy Analysis Paper #21 October 24, 1983 Page 45 RESPITE CARE PROGRAM--NORTHWEST MINNESOTA RESPITE CARE PROGRAM Leslie Fox, Director Respite Care Program--Northwest Minnesota P.O. BOX 663 Crookston, Minnesota 56716 (218) 281-5905 Information Requests: Direct inquiries to: Respite Care Program, Inc. P.O.Box 663 Crookston, Minnesota 56716 (218) 281-5905 FUNDING Type of Funding FY 1981 FY 1982 FY 1983 Total Developmental Disabilities grant $22,107 $25,000 $27,000 $ 74,107 Local match 7,764 12,360 9,000 29,124 TOTAL $29,871 $37,360 $36,000 $103,231 RESPITE CARE SERVICES PROVIDED Project Description: Short-term, temporary relief care was made available through this project for families with children and adults with developmental disabilities. On the most part, respite care services were provided in the person's own home to allow other family members to: (1) meet emergency needs; (2) fulfill vacation plans; and (3) obtain routine reprieve. Short-term, out-of-home respite care placements were also available on a limited basis in the homes of the respite care providers. Families who were registered with the program were given a list of providers in their area, and respite care arrangements were negotiated directly with the care provider. Usage of service was limited to 360 hours per year. Project staff provided technical assistance in Region 1 in order to establish similar respite care services for elderly, disabled persons. Geographic Area Served: Region 1: Kittson, Roseau, Marshall, Pennington, Red Lake, Polk, and Norman counties. Eligibility Requirements: Developmentally disabled children and adults living in their own homes.    Policy Analysis Paper #21 October 24, 1983 Page 46 RESPITE CARE PROGRAM--NORTHWEST MINNESOTA (continued) Fees for Service: Sliding fee scale with $1.25 per hour maximum limit. Number of People Served: A total of 45 families registered with this project. In FY 1981, 11 people were served; in FY 1982, the number increased to 15. During the first three quarters in FY 1983, 20 people were served. Number of Respite Care Providers Trained and/or Employed: A total of 57 respite care providers were trained and available for services. In FY 1981, 15 care providers were trained; in FY 1982, 19 were trained. During the first three quarters in FY 1983, 30 providers were trained. Publications/Products: Program brochure. Training curriculum manual. Slide presentation. Recruiting poster. Ongoing Status of Project: Alternative funding sources are being sought in order to continue the project after the developmental disabilities grant terminates September 30, 1983. Through the combined efforts of this project and agencies serving the elderly population, staff was successful in establishing respite care for elderly, disabled persons as a regional priority, which will open the door for possible funding under the Older Americans Act for that population.  Policy Analysis Paper #21 October 24, 1983 Page 47 ST. DAVID'S SCHOOL FOR EXCEPTIONAL CHILDREN ST. DAVID'S RESPITE DAY CARE PROGRAM Eric Stevens, Agency Director Marilyn Bloom, Project Director St. David's School for Exceptional Children 13000 St. David's Road Minnetonka, Minnesota 55343 (612) 935-3336 Information Requests: Direct inquiries to: St. David's School for Exceptional Children 13000 St. David's Road Minnetonka, Minnesota 55343 (612) 935-3336 Type of Funding FY 1981 FY 1982 FY 1983 Total Developmental Disabilities grant $0 $15,000 $14,000 $29,000 Local match o 20,678 8,000 28,678 TOTAL $0 $35,678 $22,000 $57,678 RESPITE CARE SERVICES PROVIDED Project Description: Licensed, center-based respite day care was provided on a regularly scheduled basis, such as one day per week, every day, or on a drop-in basis, with one to two day's notice. The purpose was not only to provide some free time for parents but also to provider after school care and care during times of family emergencies or crisis. All-day respite care was also provided during the summer and school holidays. which was particularly valuable for children of school age. Many respite care clients have had the opportunity of interacting with nonhandicapped children who are enrolled in the regular day care program at the center. A part-time outreach worker was hired to encourage better service utilization. A recent needs assessment conducted in surrounding communities in west Hennepin County revealed a need for respite care during evenings and weekends. The Project Advisory Committee discussed the possibility of providing services to meet these needs. Geographic Area Served: Western Hennepin County.  Policy Analysis Paper #21 October 24, 1983 Page 48 ST. DAVID'S SCHOOL FOR EXCEPTIONAL CHILDREN (continued) Eligibility Requirements: Children with special needs residing in their own homes, ages 6 months to 7 years. Fees for Service: No one is denied service because of inability to pay. Sliding fee scale-average fee is $1.60 per hour, with a range from $6.75 to $33.75 per week and $29.00 to $135.00 per month. Rates were lowered during the summer months. Number of People Served: In FY 1982, 37 people were served; during the first three quarters in FY 1983, 25 were served. Number of Respite Care Providers Trained and/or. Employed: In FY 1982, 4 to 6 respite care providers were employed; during the first three quarters in FY 1983, 4 to 6 providers have been employed. Publications/Products: Slide presentation. Program brochure. Public service announcements (KSTP-TV). Photo album on-program development (scope and function. Needs assessment survey report. Outreach summary report. Newsletter and local newspaper coverage. Ongoing Status of Project: Alternative funding sources are being sought in order to continue the project after developmental disabilities grant terminates on September 30, 1983.    Policy Analysis Paper #21 October 24, 1983 Page 49 VOLUNTEERS OF AMERICA--BAR-NONE IN-HOME RESPITE CARE FOR FAMILIES WITH AUTISTIC OR AUTISTIC-LIKE FAMILY MEMBERS Verlyn R. Wenndt Volunteers of America--Bar-None Residential Treatment Services 22426 St. Francis Boulevard Anoka, Minnesota 55303 (612) 753-2500 Information Requests: Direct inquiries to: Volunteers of America--Bar-None Residential Treatment Services 22426 St. Francis Boulevard Anoka, Minnesota 55303 (612)-753-2500 FUNDING Type of Funding FY 1981 FY 1982 FY 1983 Total Developmental Disabilities grant $0 $0 $26,520 $26,520 Local match o 0 5,479 5,479 TOTAL $0 $0 $31,999 $31,999 RESPITE CARE SERVICES PROVIDED Project Description: This project was administratively transferred from Alternatives for Autistic People, Inc. Therefore, it is a continuation of the project described previously in this report. Professional caregivers traveled to the family home to provide respite care. Registered families were granted a set number of hours per quarter for use throughout the year. Arrangements were made directly with the care providers who were listed with the agency. A report form and evaluation is submitted by the family to the project coordinator after each use of the service. Approximately 50 families were registered with this project during the past year. Geographic Area Served: Region 11: Anoka, Carver, Dakota, Hennepin, Ramsey, and Washington counties. Eligibility Requirements: Children and adults who reside with their families and are handicapped due to autism or have autistic-like characteristics.   Policy Analysis Paper #21 October 24, 1983 Page 50 VOLUNTEERS OF AMERICA--BAR-NONE (continued) Fees for Service: Fees were approximately $1.50 per hour. Number of People Served: In FY 1983 (during the first three quarters only), 49 children and adults were served. Number of Respite Care Providers Trained and/or Employed: In FY 1983 (during the first three quarters only), 35 providers were trained and/or employed. Publications/Products: Project brochure (in process). Ongoing Status of Project: Alternative funding sources are being sought in order to continue the project after the developmental disabilities grant terminates on September 30, 1983. Policy Analysis Paper #21 October 24, 1983 Page 51 APPENDIX B