UCP Easter Seals Heartland Program Evaluation 2009 Executive Summary On October 1, 2008, United Cerebral Palsy of Greater St. Louis and Easter Seals Missouri merged creating UCP Easter Seals Heartland (UCPESH) with the mission of providing the highest quality of programs, services for all people with disabilities and their families to ensure equal opportunities to live, learn, work and play in Central and Eastern Missouri, and Southwestern Illinois. This program evaluation report examines the consumers served, program performance, program outcomes and significant trends or issues in the services of United Cerebral Palsy of Greater St. Louis from July 1, 2008 through September 30, 2008 and the merged UCP Easter Seals Heartland from October 1, 2008 through June 30, 2009. The five primary services areas evaluated include: Children s Services Family Support Services Adult Day Services Residential Services Employment Resources In fiscal year 2009, UCP Easter Seals Heartland provided 382,042 hours of direct care services to more than 1,121 unduplicated people. An additional 3,708 people benefited from indirect services including resource and referral, disability awareness and advocacy, and autism training events. Of the people who received direct care from UCPESH: 38% had a primary diagnosis of developmental delay or mental retardation (intellectual delay). 18% had a primary diagnosis of autism. 18% had a primary diagnosis of cerebral palsy. 29% were children age 12 and under. 55% were children under age 21. 42% were age 22 through 64. 15% of consumers in the Canterbury Center Adult Day Program, 31% of Jefferson City Adult Day Program consumers and 31% of Residential Services consumers were age 55 and older. Services were provided in eight Southwestern Illinois counties and 12 Missouri Counties. UCP Easter Seals Heartland 1
Overall program services operating expenses totaled $6,127,053 and service generated program revenues of $4,983,775 resulting in a program deficit of ($1,143,278). UCPESH fundraising activities and United Way contributions are critical to the support of UCPESH services. Two significant events dictated the energy and priorities of the program staff during the year. The first was the merger between United Cerebral Palsy of Greater St. Louis and Easter Seals Missouri on October 1, 2008. The merger required renegotiation of program licenses, certifications, accreditations and vendor contracts as UCP Easter Seals Heartland. Additionally, integration of the respective organization personnel, benefits, policies, programmatic systems, program evaluation and general operational procedures was a priority. Notably, while the merger of the respective organizations had significant impact on program operations, the effect was minimized on our families and consumers. The second event was reaccreditation through the Commission on Accreditation of Rehabilitation Facilities (CARF). CARF accredits Employment Resources, Residential Services, Family Support Services and Adult Day Services. Accreditation was due for renewal in December of 2008. Because of the merger, and to allow some time for integration, UCPESH was granted an extension of their accreditation until the summer of 2009. The former Easter Seals programs; In Home Respite, Residential Respite at the Lodge, and the Manchester Adult Day Program were included in the accreditation process. The Jefferson City Adult Day Program will be included in the 2011 CARF survey. The CARF accreditation visit occurred after the end of this fiscal year report in August 2009 and as of the writing of this report UCPESH had received a three-year reaccreditation with no programmatic recommendations and one exemplary for the Supported Employment Service Employment Collaborative Program. UCPESH programs and services face a number of internal and external issues critical to consumer access to services, the quality of services and our ability to meet the changing needs of our consumers. The issues cross all five key services areas of UCPESH. More specific Service trends and issues are further identified in the detailed Services programs Funding UCPESH programs rely heavily on government funding through federal, state and/or local government funds. This is particular concern given the annual uncertainty of government funding. The State of Illinois provides a great example. In response to the Illinois State budget crisis UCPESH Lekotek funding, through the IL Department of Human Services, was discontinued effective June 30, 2009. A second concern with government funding is the regulations and unfunded mandates that often accompany the funding. A good example here is UCPESH s contract with Missouri DHSS for Adult Days Services through Adult Day Health Care Medicaid program. This federally legislated funding pays a daily rate of $75 for adult day services and this rate mandates the provision of daily transportation and therapy services for those who need them. Aging population People are living longer, that includes people with disabilities. Numerous issues are expected to emerge as the population with developmental disabilities ages. For example, national research shows that 60% of persons with developmental disabilities live with their families and in 25% of these households the primary caregiver is age 60 or older. This places people with disabilities at risk of losing their natural supports with few other options. Another concerning factor is that as people UCP Easter Seals Heartland 2
with disabilities age they will likely require greater medical supports. These aging trends will have an impact on UCPESH Adult Day and Residential Services and will likely shape the future of supports for people with disabilities. Transportation Transportation is a costly service and is a necessary component for UCPESH Services that include community integration. UCPESH relies on public transportation as a natural support and helps consumers navigate the complex world of transportation. Cuts in the St. Louis Metro public transportation system have had an impact on our consumers and community integration activities. The Agency owns a fleet of lift equipped vehicles for use in community based activities but some of these vehicles are aging. Affordable, accessible transportation is a continual barrier to service access for consumers. Technology - Assistive technology, adapted equipment and computer technology, is costly and often very individualized. Computers at Canterbury Center are aging and fail regularly. Consumer satisfaction with assistive technology is an identified weakness. Staff competency with computer hardware and software need to be improved. Service Summaries Children s Services In 2009, UCP Easter Seals Children s Services provided 60,562 hours of early intervention, education and care for 451 children under the age of 18. Additionally 1,003 hours of training in the area of autism were provided. Programs address the unique needs of specific age groups. Early Intervention, St. Louis and Alton In St. Louis, UCPESH early intervention program provides home-based developmental screening, assessment and therapy for children ages birth to three. In Alton, the Early Intervention program offers Lekotek for children up through age eight. Lekotek, developed in Sweden, is a play-based learning model where parents learn how to teach their children through play. UCPESH Autism Center, Maryville, Illinois The Autism Center, a program in partnership with The Autism Project of Illinois, is a resource center where families have access to hundreds of learning aids and resources and where they may receive technical assistance from professionals knowledgeable in the field of Autism. Additionally, the Autism Center provides autism screenings, early intervention, training, family and educator consultation, social skills groups and community training events. UCPESH Columbia Child Development Center Located in Columbia, Missouri, Columbia CDC offers an early care and education program where children of all abilities, ages six week through 12 years, learn, play and grow together. The Columbia Child Development Center is accredited through the National Association for the Education of Young Children, (NAEYC). The CDC also provides Friday night out (Camp Friday), a respite program for families and an adapted Car Seat Loan program. UCP Easter Seals Heartland 3
After School Care Working parents of teenagers with disabilities have very few choices in St. Louis for supervised care after the school day. UCPESH Manchester location offers an after school program for 16 teens with disabilities. Outcomes Achieved: 1. 100% of children who Early Intervention for at least six months demonstrated developmental gains. 2. The Maryville Autism Center achieved 100% of The Autism Program required deliverables. 3. Consumer satisfaction for Children s Services was as follows: a. Consumer satisfaction for programs offered at the Maryville Autism Center ranged from 4.6 through 5.0 with 5.0 being the highest possible score. b. Consumer satisfaction for Early Intervention Program was 3.0 on a scale of 3.0 c. Consumer satisfaction for the Columbia CDC Camp Friday program was 3.0 and the early care and education program was 2.96 with the score of 3.0 being the highest. Family Support Services In 2009, UCP Easter Seals Family Support Services helped 374 children and adults with disabilities and their families through 69,241 hours of care supports. The primary short-term goal of Family Support Services is to give families temporary relief from meeting the daily care needs of their family member with a disability. This allows families to spend time with other family members, attend to family business or retain employment. Secondarily, Family Supports Services provide emergency care for individuals with disabilities who are in crisis or have support needs without the necessary resources. The long-term goal of the family support services is to keep families together and prevent or delay placement outside of the natural home. UCPESH Family Support Service includes several programs: Overnight and emergency residential respite Offered at two UCPESH owned facilities, Marlborough Hall in St. Louis County and the Lodge in St. Louis City. In-home respite Home-based respite where families select their own providers and UCPESH help them pay their provider. Day respite Daytime care when schools are closed (educational day). Summer day camp A 10 week summer program offered in a nearby Church. August Voucher Financial assistance for August programming. Equipment and car seat loans. The Family Support services are CARF accredited. Program funding for each program varies, but nearly all funding is generated through Missouri and local government vendor contracts with the Department of Mental Health, the Productive Living Board, Missouri Alliance and the St. Louis Office for DD Resources. Outcomes Achieved 1. 100% of Residential Respite and 98% of In Home Respite consumers maintained their residency in their natural home and community. UCP Easter Seals Heartland 4
2. 98% of in-home consumers expressed satisfaction with the program. Dissatisfaction was expressed regarding the $5.75 level of reimbursement. 3. After-Stay surveys at Marlborough Hall and the Lodge rated satisfaction with services between 2.82 and 2.89 on a scale of 3 with 3 being the highest. 4. According to consumer individual plans, 65% of the consumers who stayed at the Lodge learned at least one new independent living skill during the year. 5. In the Summer Day Camp, 100% of the families were satisfied with the services. 6. Two families describe the impact of Family Support Services for their families: The in-home support program is particularly good for our program participant because he is able to work on his 'life skills' within our home while we are gone and he can also spend the time bonding with his brother who does no live with us and is a respite care provider. If not for this program, we would not be able to get away. Adult Day Services In 2009, UCP Easter Seals Adult Day Services provided 143 adults ages 21 and over, 128,693 hours of center and community-based habilitation and training at three Missouri locations; Canterbury Center, Manchester and Jefferson City. Each location offers slightly varied programs and supports, but the overall purpose is the same; to assist adults in maintaining and acquiring skills that help them live more independently in their communities. Jefferson City Gibbs Center for Independence offers two program services with a total facility capacity of 42 daily participants. The senior program, for older adults with acquired disabilities, has a social focus. The program reduces isolation, prevents premature institutionalization, and provides support for the working caregiver. This is a private pay service. Secondly, the Gibbs Center offers a day habilitation program for adults with developmental disabilities. The program is funded through Medicaid Waiver contracts. Both the senior and young adult programs operate eight hours each weekday and offer a before/after care options for working families. Canterbury Center, located in University City, offers a six-hour day habilitation program for up to 100 for adults with developmental disabilities daily. Participants are divided into two programming groups, level 3 and level 4, where they engage in training and support activities that include community integration, nursing care and therapy services. Canterbury Center services are CARF accredited and accepts primarily Medicaid Waiver contracts. The Manchester Center, located in Manchester, Missouri, offers a six-hour day habilitation program for up to 16 participants daily. As with Canterbury Center, program participants engage in training and support activities that include community integration and nursing care. The Manchester location is dually licensed through the Department of Health and Senior Services (DHSS) and the Department of Mental Health (DMH). Both Medicaid Waiver funding through DMH and Adult Day Health Care funding through DHSS are accepted. UCP Easter Seals Heartland 5
Outcomes Achieved: 1. Individuals will increase their skills or abilities in critical categories by 1% each year as measured on the Habilitation scale - Overall, the data supports that people are making progress in the skills associated with their person-centered plans. 2. People will rate satisfaction with the service at 2.5 or higher - Period satisfaction ratings ranged from 2.3 to 2.59 with the latter being achieved in the third period. Staff responsiveness and understanding of consumer s needs continues to receive the highest level of satisfaction. 3. The service will decrease the number of critical incidents by 25% by the end of the fiscal year. Critical incidents this year totaled 25 as compared to 14 critical incidents last year. Residential Services UCP Easter Seals Heartland Residential Support Services is based on the belief that persons with disabilities are entitled to work, live and socialize in communities of their choosing. In 2009, UCP Easter Seals Heartland provided 128,492 hours of supports necessary for 29 adults to live as independently as possible in homes of their own. Services included, but were not limited to, personal assistance and training in the activities of daily living. Residential Supports Services is comprised of two distinct programs: Independent Supported Living Program (ISL) and an Independent Supported Living Arrangement Program (ISLA). Both programs address the desires, goals, strengths, abilities, needs, health, safety, and life span issues of adults with disabilities who live in their own home. Services are long term in nature, but change in scope, duration, intensity, and location as the needs and preferences of the individual changes. Adults with disabilities in the ISLA program receive up to a maximum 20 hours per week of individual supports in their own residence. The program is funded through the Productive Living Board of St. Louis County and the Department of Mental Health though Medicaid Waiver. Adults in the ISL program, served in five accessible residence locations, have more significant support needs. Consumers receive individualized supports for 18 to 24 hours per day, seven days per week. Services provided through UCPESH Residential Support Services are based on the needs and preferences of each individual with the ultimate goal being greater independence in the activities of daily living and increased inclusion within the community. UCPESH Residential Support Services are accredited by CARF. Outcomes Achieved: 1. The length of time for placement from the date of referral will be less than 6 months Throughout the year, UCPESH received numerous referral packets from DMH. UCPESH does not offer the level of supports that these individuals required (medical fragility, CNA staffing, injectables). They remain on the DMH waiting list. 2. Consumer and family satisfaction of 2.5 or higher - In June of 2009, consumer and family satisfaction were measured at 2.88 and 2.43 respectively, on a scale of 3 with 3 being the highest. UCP Easter Seals Heartland 6
3. There will be no sentinel incidents Sentinel events typically involve some type of emergency response. There were a total of 10 sentinel events during the year. In addition there were 9 medication errors. Employment Resources Services In 2009, UCP Easter Seals Employment Resources assisted 124 adults with significant and multiple disabilities in finding competitive employment opportunities in the St. Louis community at job sites alongside their non-disabled peers. The Employment Resources Service offers three programs, the Supported Employment Program, the Employment Collaborative and the Summer Work Experience Program. UCPESH Support Employment Program provides traditional employment supports including: Comprehensive assessment, Individualized job development, Job coaching on location, Follow-along supports, Supports Casemanagment, Job Task Analysis The Employment Collaborative and the Summer Work Experience offer unique employment resources. The Employment Collaborative is a pilot project designed to set an example of successful integration that can serve as a catalyst for change by effectively building relationships that will lead to employment opportunities through a single point of entry between eight supported employment service providers and 25 school districts located in St. Louis County. The Program was recognized by MACDDS (Missouri Association of County Developmental Disability Services) with the 2008 Cutting Edge Award. The Summer Work Experience Program (SWEP) provides teens preparing to transition from school into the workforce with individualized and supported work experiences during their summer break. All UCPESH supported employment programs are designed to assist adults in acquiring competitive employment within their communities. UCPESH Employment Resource Services are accredited through the Commission on Accreditation of Rehabilitation Facilities (CARF). Funding for the Supported Employment Services is through vendor contracts with the Division of Vocational Rehabilitation under the Missouri Department of Elementary and Secondary Education and with the local SB 40 Boards; the Productive Living Board in St. Louis County and Developmental Disability Resources in St. Louis City. Outcomes Achieved: 1. 100% of people supported were employed in vocations consistent with their interests. 2. The average starting wage for all person s served was $7.56, which exceeded the targeted outcomes by $.31. As of June 30, 2009 current wages paid averaged $8.66 per hour representing a decrease of $.45 from the average wages paid at the end of October 2008. UCP Easter Seals Heartland 7
3. The average hours worked per week remained relatively consistent throughout the year averaging just over 26 hours per week. Thirty-nine percent of the persons UCPESH supports are employed in full time positions. 4. Job retention during the year was 86%. Of the 44 persons employed during the year, four were terminated from their positions and two resigned their positions through their own choice. 5. Overall satisfaction of consumers and employers was measured on a three-point scale with 3 representing the most satisfied. Consumer satisfaction rose during the year from a 2.63 in the first period to a 2.76 in the last period. Employer satisfaction also rose from a 2.71 in the first period to a 2.8 in the final period. UCP Easter Seals Heartland 8