Research and Training Center on Community Living (RTC-CL)
2013-18 Research Summaries

Principal Investigators:

Renáta Tichá is a research associate at RTC/CL. She can be reached at tich0018@umn.edu or 612-624-5776.

Amy Hewitt is director of RTC/CL and the Institute on Community Integration, University of Minnesota Twin Cities. She may be reached at hewit005@umn.edu or 612/625-1098.

Roger Stancliffe is professor of intellectual disability at University of Sydney. He can be reached at roger.stancliffe@sydney.edu.au or 61-2-9351-9984.

Purpose of the study

The National Core Indicators (NCI) is a project to gather data about the utilization and quality of Medicaid Home and Community-based Services (HCBS) waivers in states across the country. The Research and Training Center on Community Living has partnered with the National Association of State Directors of Developmental Disabilities Services and the Human Services Research Institute since 1997 to perform analyses of this data.

The NCI data provides insight into the effects that programs and policies have on lives of people with intellectual and developmental disabilities (IDD). The data can also be used to help identify barriers people with IDD face to living their best lives. The NCI data can be used to inform the development of new programs and policies as well as provide information about the effectiveness and quality of existing services.

Key findings

Analysis of NCI data revealed the following:

• People with an intellectual disability who also had autism spectrum disorder were less likely to be employed in the community than people with IDD without ASD.
• Participants with ASD were more likely to live with family members and less likely to live in their own home, especially those individuals under the age of 30.
• The service system (i.e. Medicaid and other publicly-funded programs) will need to provide adequate resources to community-based residential settings such as group homes to create successful living environments for people with ASD and their caregivers.
• 25 years after signing of the Americans with Disabilities Act there has been an increase in relationships, choice and decision-making, work, self-determination, community inclusion, and satisfaction with services for people with IDD.
• Since the Olmstead Supreme Court decision, the data has suggested that small, individualized living arrangements lead to greater individual choice, satisfaction, housing stability, and community participation.
• People living in their own homes, small agency residences, and host family homes had more choice-making opportunities than people living in larger settings.
• People living in family homes had greater satisfaction than in other small and larger settings.
• The cost of services and supports was found to be lower for people in family and host family homes than people living in their own homes or small agency residences.
• Individuals with IDD residing in small agency settings and institutions were more likely to receive regular preventive health services such as annual physical exams, flu vaccines, colorectal cancer screenings, and mammograms, than those living in their own homes or with family members.

Outcomes

Given its scope as a national survey and its annual administration, the NCI data is a great contribution in evaluating services and quality of life for people with intellectual and developmental disabilities. The analysis of this data serves to inform policy and service systems for people with intellectual and developmental disabilities at the state and federal levels.

Lessons learned

• There were several characteristics, including level of intellectual disability, level of communication, and mobility, that repeatedly influenced the various measures of quality of life explored in the NCI data analysis.
• The NCI is one of the few national datasets available that provides information on characteristics and quality of life outcomes of people with IDD on an annual basis. A shortcoming and future opportunity for NCI would be to give the survey to a group of the same individuals each year. This would provide longitudinal data.

Implications for future research and related activities

• Future research will focus on studying additional quality of life outcomes for people with IDD.
• We will work with the NCI program and other initiatives to begin collecting and analyzing longitudinal data on characteristics and outcomes of people with IDD. This data can then be compared with other developed countries that collect longitudinal data, such as the United Kingdom, Ireland, Denmark, Sweden, and Australia.
• We will continue to push the field of home and community-based services and long term services and supports to refine ways to measure characteristics and outcomes of people with disabilities in the most reliable, valid, and accurate manner.
• Given the results of the NCI studies conducted through this center grant, we will begin reviewing the data by subpopulations such as people with severe to profound intellectual disability, severe behavior disorders, aging needs, etc. This will allow for more targeted conclusions.

Principal Investigators:

Jennifer Hall-Lande is a coordinator at RTC/CL. She can be reached at hall0440@umn.edu or 612-626-1721.

Purpose of the study

Medicaid Home and Community-Based Services (HCBS) 1915(c) waivers are a funding authority through which eligible people with autism spectrum disorders (ASD) gain access to long-term services and supports. This review examined the extent to which adults and children with ASD are eligible to participate in state HCBS waivers in 2016 and compares the findings to a review completed in 2011.

HCBS waivers are an important way that people with ASD gain access to long-term services and supports that promote community living and participation. This systematic national review examined availability of HCBS waivers for people with ASD across the lifespan, and replicated a review by Hall-Lande and colleagues (2011) to examine the delivery of services at two points in time.

Key findings

• From 2011 to 2016 there was a slight increase in the number of states that included people with ASD in waivers with a related clause that includes ASD and ASD-specific waivers for children and adults.
• Recent policy changes have affected delivery of HCBS 1915(c) services and supports and are expected to continue impacting delivery of services across states.
• Gaps and discrepancies in service delivery were evident across states, particularly for adults with ASD.

Methods for addressing the problems and their impact

• To address the issue around connecting with staff supporting people with developmental disabilities (when needed), we attempted to connect across multiple communication modes (email, phone, etc.).
• With the inclusion of a larger research team (including peer reviewer, auditor, other member) the study was strengthened by having multiple researchers examine interviews to ensure inter-coder agreement.
• Ongoing coding consistency checks provided a structured opportunity for the primary researcher to assess the analysis for consistent application of category definitions and the reliability of emergent data codes.

Outcomes

• The availability of HCBS waivers varied across states and gaps were evident in delivery of services, particularly for adults with ASD.      
• Recent federal policy mandates have affected delivery of HCBS services and supports and are expected to continue impacting delivery of services across states.
• The study found growth in the number of states utilizing ASD-specific waivers for children and youth between the 2009/2010 and 2015/2016 time periods.
• Understanding discrepancies and gaps in access to services and supports across states can inform efforts to meet the growing need for services and supports for people with ASD.

Lessons learned

• Understanding national trends in HCBS waivers and how these trends influence people with ASD is important in shaping policy and meeting the service needs of people with ASD and their families.
• Understanding differences and gaps in access to services and supports across states can inform efforts to meet the growing need for services and supports for people with ASD.
• These data are a snapshot at a particular point in time. Waivers evolve rapidly, particularly as federal mandates related to Medicaid HCBS have recently changed. Therefore, HCBS could be available in different ways for people with ASD as new policies are implemented.

Implications for future research and related activities

• Ongoing research is needed to monitor changes in eligibility of adults and children with ASD for HCBS Waivers. 
• It will be important to conduct additional research to examine how Early Intensive Developmental and Behavioral Intervention (EIDBI) is changing the ASD waiver landscape for children with ASD.
• Other topics of future studies include changes in the demand for services, waiting lists, and projected growth needs for HCBS for people with ASD in states.

Principal Investigators:

Jennifer Hall-Lande is a coordinator at RTC/CL. She can be reached at hall0440@umn.edu or 612-626-1721.

Purpose of the study

Self-direction is an approach to designing long-term services and supports that aims to provide greater control for individuals with disabilities and their closest supporters. This study examined implementation of self-directed supports for individuals with intellectual and developmental disabilities (IDD) in 35 states using self-directed service options. Researchers interviewed state developmental disabilities administrators to examine strengths, challenges, and recommendations for Self-Directed Supports Waiver implementation.

Approximately 80% of those who have implemented statewide programs participated in the study. While some states were not able to participate, the current study is based on a robust sample of a population that is unique and difficult to access.

Key findings

• The majority of states with self-directed programs allow participants the ability to self-direct more than five services and supports.
• Increased opportunities for participant self-determination and improved relationships with support staff were identified as common strengths of self-directed programs.
• Common challenges of self-directed programs included restructuring relationships with case managers, creating rules for the programs, and enforcing appropriate use of services and supports.
• In 2015, 42 states offered a self-directed option for one or more Medicaid Waiver programs. 75% of those states offered the person control over her/his service budget within their self-directed option. 60% allowed participants to self-direct five or more services or supports.
• Participants recommended that self-directed options should increase involvement of families in training, increase the number of people choosing self-directed options, and streamline services using technology.

Methods for addressing the problems and their impact

• To address the issue of connecting with state developmental disabilities directors, we attempted to connect across multiple communication modes (email, phone, etc.). When available, we also used a proxy such as another employee with expertise in self-direction.
• The present study was strengthened by having multiple researchers examine interviews to ensure the reliability of codes and inter-coder agreement.
• Ongoing coding consistency checks provided a structured opportunity for the primary researcher to assess the analysis for consistent application of category definitions and the reliability of emerging data codes.

Outcomes

• One of the most important findings from this study is the extent to which the philosophy of self-determination has been adopted by state public administrators and state-level staff, especially as it pertains to self-directed supports.
• State administrators and staff described the most important part of self-directed supports to be the opportunity for greater self-determination. The key components of self-directed programs include individual choice, flexibility, person-centeredness, and variation across the lifespan; these components reflect the self-direction movement. 
• State level administrators demonstrated a preference for systems/supports that would expand participants’ level of self-direction and individual choice and attract more people with disabilities and their families into self-directed waiver options.
• Although state administrators want to increase opportunities for self-determination and self-directed supports in their states, the challenges of public administration can be a barrier to their ability to fully implement self-direction/self-determination principles. Many administrators spoke of "transformational leaders" as necessary ingredients for promoting and providing the groundwork for self-directed programs in each state.
• Many state administrators shared how advances in technology will influence the future implementation of self-direction systems and supports moving forward.
• As states increasingly turn to statewide systems of electronic billing, online budgets, and standardized evaluations, there is a concern that the person centeredness/individuality may be lost in the process.

Lessons learned

• At times, state level administrators may have responded to questions in ways to appear more supportive of self-direction or responsive to the needs of families and individuals. Thus, it was important that the interview questions and interviewer did not present with a potential bias or advocacy lens.
• Data trustworthiness and reliability of the study results were supported with the help of a research team in the auditing, peer review, and research team coordination process.

Implications for future research and related activities

• How persons with self-directed services and their families experience more technologically/electronically-focused systems.
• Exploration as to why numbers enrolled in self-directed programs are not increasing.
• The role of case managers in self-directed programs.
• The balance of flexibility and responsibility.
• Exploration of states not offering self-direction.

Principal Investigators:

Lynda Lahti Anderson is a researcher at RTC/CL and the Institute on Community Integration, University of Minnesota Twin Cities. She may be reached at lla@umn.edu or 612/626-7220.

Sheryl Larson is a research manager of RTC/CL and director of the Residential Information Systems Project. She may be reached at larso072@umn.edu or 612/624-6024.

Amy Hewitt is director of RTC/CL and the Institute on Community Integration, University of Minnesota Twin Cities. She may be reached at hewit005@umn.edu or 612/625-1098.

Purpose of the study

The purpose of the Family and Individual Needs for Disabilities Supports (FINDS) Survey is to understand the experiences of families who provide supports to a family member with intellectual or developmental disabilities (IDD). An estimated 43.5 million people provide support to a family member who is aging or who has a disability (National Alliance for Caregiving, 2015). The FINDS survey was initially conducted by The Arc of the United States in 2010 and was updated in 2017 through a collaboration between the Research and Training Center on Community Living (RTC/CL) at the University of Minnesota and The Arc.

Key findings

• Families of people with IDD provide support that differs in scope, intensity, and duration from other family caregivers.
• Caregiving has negative consequences for caregivers’ employment and economic outcomes.
• Caregivers report impacts such as needing to quit work, reduce hours, or turn down promotions in order to provide care.
• Families providing support to individuals with higher support needs report greater levels of stress, unmet needs, and poorer health as well as poorer outcomes for their family members with a disability.
• Families feel unprepared as they make transitions across the lifespan, such as the transition from school to the adult world.
• Supports that can have a positive impact on both the caregiver and the individual being supported, such as respite to allow for some time apart, are in short supply. For families that do have in-home support services, the difficulty finding direct support professionals can cause challenges for the caregivers as well as for the individual supported.
• One in four caregivers reported that their family member was waiting for a government-funded service. Medicaid waivers were the most frequently mentioned support for which people were waiting.

Outcomes

• An estimated 7.3 million people with IDD live in the United States, with the majority living in their family home receiving support from a family member.
• The report includes survey responses from over 3,000 caregivers and provides information on the economic implications, logistical challenges, and major gaps that exist in caregiving infrastructure. 
• The FINDS survey revealed that, despite the progress that many states have made to increase availability of resources and public funding to provide supports for caregivers and individuals with disabilities, many critical challenges remain. 
• The scope, intensity, and duration of caregiving responsibilities for FINDS caregivers is greater than that reported by other caregivers.
• These responsibilities, coupled with challenges finding adequate supports for their family member, explain the high levels of stress reported by FINDS caregivers and highlight the need for more attention on caregiver supports.

Lessons learned

• The number of people responding was large (3,398) and provides important information about the experiences and outcomes of family caregivers of individuals with IDD in the United States. However, the sample is not reflective of the racial and economic diversity of the United States. With future surveys, additional national organizations will be enlisted to improve outreach to diverse communities.
• Future surveys will be refined to better reflect family strengths and resiliency.

Implications for future research and related activities­

• The reported challenge of the direct support workforce has significant policy implications. As services and supports have become increasingly individualized and as the population of the United States ages, the need for an increasing number of workers trained to provide community supports to people with a variety of needs is apparent. In addition, the number of individuals waiting for services while living in the family home is an additional concern as the caregiving population ages.
• The economic impacts of caregiving have implications as aging caregivers reach retirement and have increased care needs of their own.
• Although efforts such as Employment First, Consumer Directed Supports, and similar policies have been developed to promote the full inclusion of people with disabilities into their communities, it is clear that these efforts are not working for all individuals with IDD. Caregivers often know the supports their loved one with a disability needs and wants, but accessing those supports can be a challenge due to limited access, workforce, or availability.

Principal Investigators:

Kelly Nye-Lengerman is a research associate at RTC/CL. She can be reached at knye@umn.edu or 612-626-7322.

Amy Hewitt is director of RTC/CL and the Institute on Community Integration, University of Minnesota Twin Cities. She may be reached at hewit005@umn.edu or 612/625-1098.

Purpose of the study

This study examines the skills, knowledge, and training needed by direct support professionals (DSPs) to support people with intellectual and developmental disabilities (IDD) who live with their family through either a self-directed model delivered in a family home or in a traditional family in-home support model. There is little previous research on this topic.

Key findings

• DSPs report they would like to provide support outside of the home in community settings, but often spend most support hours on daily living and household supports such as dressing, bathing, preparing and eating meals, managing finances, and cleaning.
• DSPs report they feel committed and connected to the individuals they support in in-home services, and plan to stay in the field for more than 1 year.
• Families reported they were often too busy, too fatigued, or didn't have enough staff to be able to participate in research that include DSPs.
• Families faced barriers to being able to have in-home support due to DSP workforce shortages.
• More families with children under 18 were interested in participating in this type of research.

Methods for addressing the problems and their impact

• Collected data from individuals and families who declined to participate in this study to best understand why they chose to not participate.

Outcomes

• This study highlighted the challenges of engaging families in research. Incentives, time commitments, and recruitment need to be reexamined.
• Due to the workforce shortage, it is necessary to work in partnership with other organizations to ensure a more stable DSP base to study.
• The data collected from families who declined to participate in the study confirmed that families do not have access to consistent or stable DSPs.
• Many families experience "system fatigue" and do not feel they can take on more.
• Families with younger children may be more easily recruited for a study of this nature.

Lessons learned

• The DSP workforce shortage significantly affects families, but also makes conducting this type of research extremely difficult.
• System fatigue for families’ needs to be considered in future research design.
• DSPs in this study spent the majority of their time in care roles providing daily living and household supports rather than supporting people in the community.

Implications for future research and related activities

• Develop research protocols that include families with children under 18 to study DSPs in family home settings.
• Investments in workforce stabilization are critical.

Principal Investigators:

John Butterworth is a research fellow at the Institute on Community Inclusion, UMass Boston. He can be reached at john.butterworth@umb.edu or 617-287-4357.

Kelly Nye-Lengerman is a research associate at RTC/CL. She can be reached at knye@umn.edu or 612-626-7322.

Purpose of the study

This study was designed to provide national and state-by-state understanding of the strategies and practices used to advance community employment, add to the limited knowledge of the effects of specific practices on employment outcomes over time, and provide a broader understanding of how high-performing organizations innovate and sustain innovation to support people with intellectual and developmental disabilities (IDD) to obtain and keep community employment.

Key findings

• Employment consultants spend their time in a variety of activities to support job seekers, but a significant portion of their time (30%) is spent on administrative functions or paperwork.
• Employment consultants, their supervisors, job seekers with IDD, and family members report that spending time to get to know job seekers and building trust are important features of the job placement process. 
• During an intervention study with employment consultants, which included daily activity tracking, 70% reported they improved their support strategies during the past year.
• State factors and organizational context and culture can significantly influence how employment consultants and other employment professionals provide employment supports to job seekers and families.
• Despite literature that identifies effective practices to support job seekers with disabilities, most employment consultants and other support professionals use techniques and strategies during the placement process that are not very effective. 

Methods for addressing the problems and their impact

• Qualitative interviews were conducted with employment consultants, supervisors, job seekers with disabilities, and family members about employment supports.
• Multiple quantitative analyses were conducted on national data sets examining variables that affect employment outcomes for people with IDD.
• An intervention study was conducted examining the effects of a support and training intervention with employment consultants.

Outcomes

• A comprehensive model of employment supports was developed. This was informed by employment consultants (ECs), supervisors, job seekers, and family members. This model serves as a foundation on effective employment practices for job seekers with IDD.)

  

  Graphic from Rehabilitation Research & Training Center on Advancing Employment for Individuals with IDD.

• Increased the body of knowledge of employment supports and services for people with IDD and related conditions by publishing more than 15 publications on the topic. 
• Generated new knowledge of the use of technology, micro-learning, and data-based decision making for ECs and their employers (i.e. employment provider agencies).

Lessons learned

• The quality of employment support practices is influenced by organizational culture and structures within an agency.
• A holistic job placement process that prioritizes job seekers’ preferences and strengths, and includes support activities of getting to know the job seeker, building trust, and finding job matches, continues to highlight the best and most promising practices in the field.
• ECs spend 30% of their time in administrative activities, yet building trust and getting to know the job seekers were identified as areas that are more effective.
• Micro-learning, such as completing a daily survey on support activities with a cell phone, was reported to have a positive impact on increasing mindful practices in ECs.
• Most employment provider organizations (i.e. community rehabilitation programs (CRPs), supported employment programs) are not collecting activity or outcome data, but would like to be and are seeking assistance to do so.
• Employment outcomes have remained stubbornly stable despite significant investments, which indicate the need for both policy and practice solutions working collectively.

Implications for future research

• Dissemination will result in further attention to the issue of EC and CRP quality as critical features of improving employment outcomes.
• The intersection of individual EC and organizational practices remains a great need for the field.
• Micro-learning, the use of technology, and data-based decision making will be examined further to explore feasibility and impact on outcomes for job seekers, ECs, and organizations.

Principal Investigators:

Brian Abery is a research associate at RTC/CL. He can be reached at abery001@umn.edu or 612-625-5592.

Renáta Tichá is a research associate at RTC/CL. She can be reached at tich0018@umn.edu or 612-624-5776.

Purpose of the study

The study was designed to develop and evaluate a curriculum for family members/caregivers of youth, young adults, and adults with disabilities to better support their self-determination. The study was composed of five phases: 1) review of previous research, existing curricula, and other materials on the topic; 2) gathering information on trends and opinions from experts in the field; 3) Participatory Planning and Decision Making (PPDM) groups with caregivers and people with disabilities; 4) development of a new curriculum for caregivers to better support self-determination of their child or adult with a disability; and 5) evaluate the usability, feasibility, and effectiveness of the curriculum.

Key findings

The areas identified as critical components of the new curriculum included: a) disability, disability awareness, and identity; b) family member roles and family culture in supporting self-determination; c) collaborative choice making and supported decision making; d) barriers to problem solving; e) self-regulation and self-management; g) communication; h) relationships; i) independence, risk taking, and safety; j) psychological empowerment; and k) environmental support for self-determination.

Based on the opinions of experts in the field of self-determination, the following components were identified as most important: 1) navigating systems, 2) building and supporting relationships, 3) choice- and decision-making, 4) understanding and planning for life transitions, 5) setting and working towards personal goals, 6) knowledge of self-determination, 7) self-awareness, self-esteem, and self-identity, 8) person-centered services, and 9) self-advocacy and empowerment.

Based on the PPDM process, the three domains rated the highest by caregivers were: 1) navigating systems, 2) building and supporting relationships, and 3) self-awareness and identity. Caregivers rated person-centered services as their least important domain, and all of the main domain categories were rated as critically important.

The top-rated three domains by self-advocates were: 1) self-awareness/identity , 2) self-advocacy and empowerment, and 3) choice- and decision-making. They rated person-centered services as second to last, navigating systems as their least important domain, and all of their main domains were rated as very important.

Methods for addressing the problems and their impact

Instead of using an in-person implementation of the self-determination modules for caregivers, we adopted a telehealth/telepractice model with which we can include several families together to provide the training in their homes via the online WebEx platform. This model has been much more feasible and efficient in delivering the self-determination curriculum for family members of people with intellectual disabilities.

Outcomes

This project has made two main contributions to the field of improving the lives of people with intellectual disabilities and their families: 1) developing a curriculum for caregivers on how to better support self-determination of the family member with a disability based on the state of the science in the field; and 2) establishing feasibility, usability, and effectiveness of the curriculum delivered via a telepractice model.

We found the format of telepractice for delivery of the self-determination curriculum to be a powerful tool to use with family members of people with disabilities for the following reasons: a) they could participate with ease on their home computers without having to go anywhere and without having anyone come into the privacy of their home, and b) it provided a non-threating platform for discussions of their experiences of the successes and challenges with supporting their children (including adult children) to be more self-determined.

Lessons learned

• Certain topic areas of the self-determination curriculum were more important for families of people with intellectual disabilities than others, with Navigating Systems and Advocacy being most interesting.
• The telepractice model worked well as a medium for delivering this self-determination curriculum, both from the perspective of participants and researchers.
• The curriculum delivery format should be in longer sessions that are not administered as frequently (less often than weekly).
• One of the key messages from the training sessions consisted of making sure that the self-determination concepts and strategies truly reflected the intentions of the family member with a disability, rather the needs of the caregivers.

Implications for future research and related activities

The results of this study provide supporting evidence for the delivery of a self-determination curriculum for caregivers of people with disabilities in a telepractice format, thus making it more accessible to families in their homes. Given that more than 50% of people with IDD now live in family or foster homes, it is critical that families have access to materials that can assist them in supporting the goals and dreams of people with disabilities.

Families often struggle with navigating the resources and supports for their family members with IDD in employment, medical care, relationships, and accessing natural supports. This curriculum can help families become more aware of the options and strategies available to support their child or adult with IDD to feel more self-determined and successful in working toward their goals and dreams.

Principal Investigators:

Angela Amado

Roger Stancliffe is professor of intellectual disability at University of Sydney. He can be reached at roger.stancliffe@sydney.edu.au or 61-2-9351-9984.

Purpose of the study

Even though a majority of adults with intellectual and developmental disabilities (IDD) live with family members, there has been no research into strategies that could be used to increase the social inclusion of a person with IDD who lives with family. This study evaluated two approaches to improving the social inclusion of adults with IDD. First, researchers tested strategies that have been successful for those living in residential settings such as group homes compared to those living in family homes. Next, researchers studied the use of TYZE (www.tyze.com), a website tool for identifying, developing, and supporting personal support networks.

Key findings

• The study found successes in expanding social inclusion for young adults with intellectual and developmental disabilities who live with their families. Families discovered that community members such as neighbors and people at church were willing to include and befriend their loved one with a disability.
• Some family members saw more clearly the gifts their children have.
• Some family members increased their expectations regarding the types of relationships their loved one with a disability might have within the larger community now and in the future.
• In the study, people of all levels of disability increased their inclusion in their communities, but each person's outcome was highly individual. Families clearly believed that having friends and social relationships was very important for their loved one with a disability.

Methods for addressing the problems and their impact

A challenge for researchers in this study was recruiting and retaining families to participate in the study. Researchers extended and broadened the initial recruitment efforts to find more families willing to participate, but they had limited success. The study was designed to be flexible and accommodating of families' needs, but researchers still experienced a high dropout rate over time. One strategy that did help maintain family participation was scheduling follow-up meeting times and locations to be convenient to families.

Outcomes

• A range of social inclusion outcomes was achieved. Families reported that the training in techniques for developing social inclusion was helpful.
• Adults with intellectual and developmental disabilities who participated in this study increased their relationships and connections within their communities in a variety of ways.
• Participating families reported that the training they received as part of the study to help their loved one with a disability increase and deepen relationships within their communities was helpful.
• Scheduling follow-up meetings with the researchers motivated families to carry out their ideas and plans.
• Sharing of ideas among families was helpful.

Lessons learned

• There were a number of differences in the approach required to train and support families to increase social inclusion, as compared to training group home staff.
• For example, family participation was voluntary so it was easier for families to drop out. Parental health was also a factor in participation in follow-up meetings.
• Families were much more aware than group home staff about the person’s previous relationships, including friends from school or former staff. Connecting with old friends was a very successful strategy in many cases.

Implications for future research and related activities

• This project involved family time and effort to initiate and achieve social inclusion. Participating families that continued to take part throughout the project were those in which there was sufficient family support at home, sufficient knowledge of the support system to have in-home staff support, and/or sufficient stability in the family situation to “afford” the time to participate in project activities. It is also notable that these families were well-educated with somewhat higher family incomes.
• For the large number of families that could not participate a different approach—one not based on family participation and effort—may be more successful. 
• Many families were interested in increasing social relationships for their child, but wanted different structures, such as friendship groups or service providers, doing the integration work as opposed to themselves.
• More frequent family contact, possibly in a family’s own home may have helped overcome some problems with participation.
•  A more accurate and consistent way to measure social inclusion is needed; this measure should not be too complicated or time-consuming for participants.

Principal Investigators:

Brian Abery is a research associate at RTC/CL. He can be reached at abery001@umn.edu or 612-625-5592.

Renáta Tichá is a research associate at RTC/CL. She can be reached at tich0018@umn.edu or 612-624-5776.

Purpose of the study

Implementing programs and interventions in home- and community-based settings (HCBS) for people with intellectual and developmental disabilities (IDD) and related disabilities has not been an easy task, as indicated by several randomized control trials. In order for such programs and interventions to have a positive impact on the quality of life for people with disabilities and their staff, it is important to identify the facilitating factors and barriers of their implementation.

Key findings

When organizations are considering whether to implement and sustain an intervention, program or training, it is critical that they have key components in place in order for the initiative to be successful. The factors that need to be present across different levels of the organizations include:

• person-centered training, approaches, and regulations
• workforce quality, cohesion, and stability
• engagement of professionals and leadership at the county, state, and federal level
• clearly communicated training opportunities that align with organizational values
• organizational support for training and implementation initiatives

Methods for addressing the problems and their impact

A two-phase environmental scan investigated numerous factors at the individual (staff) level; unit, department, and organizational levels; and county, state, and federal levels to determine what was effective in 1) facilitating high fidelity program implementation, and 2) program sustainability. In phase three, participatory planning and decision-making (PPDM) groups were formed with program administrators and frontline supervisors.

On the basis of the environmental scan and PPDM groups, staff were able to develop a conceptual framework for effective implementation and sustainability of programs designed to enhance the quality of life of persons with IDD living in community-based residential settings. This framework was used to develop a tool to assess: 1) readiness for program implementation, and 2) resources needed to ensure high fidelity program implementation and sustainability. Agencies that took part in this project now have an organizational level tool they can use to determine the extent to which existing resources are sufficient to ensure high-fidelity program implementation and sustainability and—if sufficient resources are not currently available—those that need to be developed/acquired.

Outcomes

Based on the results of the environmental scan and PPDM groups, project staff developed and piloted a 46-item program implementation organizational readiness survey. The survey assesses an organization’s capacity to undertake implementation of new programming and the resources it needs to ensure effective implementation and sustainability. Areas assessed include goals, objectives, and communication; administrative/management support; adequacy of resources; team building; staff characteristics; assessment, monitoring, and follow-up; and training.

Implications for future research and related activities

The research undertaken as part of this project allows further understanding of those factors that HCBS providers need to consider when implementing new programs. It also  provides them with a tool they can use to determine the extent to which they already possess the necessary resources for effective program implementation or need to develop these assets prior to program implementation.