Background: Over the past half-century, there has been a tremendous shift in the number of individuals with developmental disabilities living in the community in settings such as family homes, smaller group homes, shared apartments, and individually owned or rented houses or apartments. [i] More than three of every four people with intellectual or developmental disabilities of all ages live in the home of a family member. [ii] In 2014, 84% of the 431,710 individuals not living with a family member shared a home with six or fewer people with developmental disabilities. [iii]
This trend toward community living has been supported by federal and state policy. Far more importantly, for the last half century, it has been and continues to be greatly influenced through the advocacy, hard work and aspirations shared by men, women, youth and children with developmental disabilities and their family members to live and fully participate as productive citizens in typical communities. Research shows that individuals with developmental disabilities living in the community have better quality-of-life outcomes related to health, autonomy and privacy, and social engagement, including:
People who live in the community are more likely to exercise (26% for people who live in their own home or apartment and 20% for people who live in a group home) than people who lived in an institution (16%).
Fewer people living in an institution (76%) reported that they are notified before someone enters their bedroom compared to those living in the community (82% group home, and 90% own home).
When asked if they had friends who were not staff or family members, 81% of individuals with living in their own home or apartment responded affirmatively compared to 73% of those who lived in a group home and 70% who lived in an institution. [iv]
Recent research also shows positive employment outcomes for individuals living in the community. A 2016 study described people living in independent homes or apartments had the highest numbers of community-based paid jobs (27.8%), whereas people living in ICF or specialized institutional settings had the lowest rates of community employment (3.5%). Of those living with parents or relatives, 15.2% were reported as having a community paid job, as were 11.2% of people living in group homes or agency-operated apartment programs. [v] While such trends are positive, further progress can and must be made.
While there is growing demand among individuals with developmental disabilities and their families to live in home or community settings and to have the opportunities to achieve greater positive outcomes in life, access to the necessary services to realize this goal varies greatly across the country. There is, therefore, a growing tension between unmet demand for long-term supports and services that foster independent living and community integration and the availability and quality of such services.
The most recent research from the Kaiser Foundation on Medicaid-funded HCBS utilization found that individuals living with developmental disabilities comprise 41% of total enrollees across all 1915(c) HCBS waivers, but represent 71% of total HCBS waiver expenditures. While the majority of HCBS waiver expenditures are focused on individuals with developmental disabilities, there is great variation across states and localities in terms of both access and quality. [vi]
With such variation in access to and the quality of HCBS received, and in the capacity of providers and direct support staff to meet the growing demand for HCBS, the health, safety and well-being of individuals living in the community can be put at risk. Recent reports from the U.S. Department of Health and Human Services Office of Inspector General (OIG) identified persistent concerns around individual health, safety and well-being. [vii] Specifically, in two independent state audits, the OIG found that: (a) direct support staff inside group homes for people with intellectual and developmental disabilities lacked adequate training related to critical incidents and were not following appropriate health and safety protocols; (b) the state agencies responsible for HCBS did not adequately safeguard such beneficiaries; and (c) remedies involving the updating of policies, coordination of incident reporting and monitoring, and additional training required of staff in group homes are critically important to quality assurance and systems change. [viii]
A critical but missing component to ensuring quality community living is a coordinated and comprehensive system for monitoring the health, safety and well-being of individuals with developmental disabilities in the community. While there is infrastructure in place for monitoring institutional settings including the State Protection and Advocacy Systems, the Long Term Care Ombudsman, and state survey and certification entities, there is only limited coordination and supports for effective community monitoring.
The rapid growth of and demand for community living makes it paramount to develop and implement effective approaches to building a coordinated community monitoring system around health, safety and well-being, and to implement effective strategies for preventing, and reducing abuse and neglect. The limited federal oversight and monitoring of programs across all States leaves a gap to fill in developing a model system of coordinated, comprehensive community monitoring and related strategies that serve as key components for assuring that individuals access and receive quality HCBS.
The Administration on Intellectual and Developmental Disabilities (AIDD) seeks to fund up to 3 projects as cooperative agreements for the development and testing of one or more model approaches of a coordinated and comprehensive system that includes two interrelated core components for enhancing and assuring the independence, integration, safety, health, and well-being of individuals living in the community:
Community Monitoring: Development and implementation of a coordinated system utilizing multiple community and state level partners for monitoring the safety, health, and well-being of individuals with intellectual and developmental disabilities living in a variety of community settings and identifying and eliminating the risk factors for tracking, redressing and preventing abuse, neglect and exploitation in community settings.
Community Capacity Building: Application of evidence based practices and innovative strategies focusing on improving services that support people with developmental disabilities living in the community or those moving to the community from a more restrictive setting; access to and quality of community services through capacity building and scaling of evidence based and other promising practices; reducing and mitigating the incidence of and risk factors for abuse and neglect; and supporting empowerment, self-determination, self-advocacy, and an individual’s independence, autonomy and right to live alongside their non-disabled neighbors.
It is expected that such comprehensive model approaches that coordinate between these two components will work towards:
Enhancing the health and safety of individuals by increasing their independence, social capital, self-determination, community integration, productivity and participation.
Strengthening and rewarding the knowledge, skills, specialization, economic/career prospects and work force stability, retention and advancement of direct support professionals.
Incentivizing the effective adoption and use of evidence based or promising practices related to supported-decision making, person-centered thinking, competitive integrated employment and similar strategies.
Strengthening and elevating the leadership roles that self-advocacy organizations, Centers for Independent Living and other peer support networks, working together with families and others, must play in improving and assuring the quality of home and community based services.
Enhancing the effectiveness and coordination of efforts by the state, the DD Act network and others to anticipate, avoid, investigate, reduce and remediate abuse, neglect and other rights violations in the HCBS service delivery system for people with developmental disabilities.
Applicants can propose the testing of innovative strategies and create a coordinated monitoring system from the ground up, build on and strengthen systems or processes that already are in place, or a hybrid approach.
Applicants must provide a strong rationale and evidence as to why the proposed approach is likely be effective, and must also describe the potential for replicability/adaptability of the proposed model by other states. The successful applicant will also demonstrate the national significance of the proposed model in improving the everyday lives, health, well-being, integration and self-determination of individuals with developmental disabilities of all ages, races, ethnicities, and backgrounds living in the community.
Applicants are asked to address the following key features of an integrated model of community monitoring and capacity building for enhancing and assuring the independence, integration, safety, health, andwell-being of individuals living in the community:
Partnerships in the design, implementation, and replication of the model. Applicants must describe how they will partner with local and state level organizations, agencies and other relevant stakeholders, including at least one self-advocacy organization, to implement evidence based or other promising practices and/or develop new, innovative strategies for improving and monitoring community living, including HCBS services, to assure the overall well-being of individuals in the community; and for carrying out capacity building activities. Successful applicants will propose a coordinated approach across various agencies and organizations that build upon existing infrastructure in the state to develop a model that could be scaled, refined and applied in other states and communities. A signed Memorandum of Understanding (MOU) between the members of the partnership must be submitted as part of the application. The agreement should describe how the entities participated in the development of the application and how they plan to work together to ensure the goals and objectives included in the application are achieved. At a minimum, the partnership must include:
At least one of the following:a. A Protection and Advocacy System (42 U.S.C. 15041 et seq); b. State Developmental Disabilities Council (Public Law 106-402, 42 U.S.C. 15021 et seq); orc. University Centers for Excellence in Developmental Disabilities Education, Research, and Service (42 U.S.C. 15061 et seq ).
At least one state agency:a. State Intellectual Disabilities/Developmental Disabilities Agency;b. The State Medicaid agency; c. Self-Advocacy organization(s); d. Consumer controlled organizations, such as Center(s) for Independent Living; ore. Family led organizations.
Additional partners may also include:a. Non-profit organizations led by persons with developmental disabilities and/or families of such individuals who have with demonstrated expertise and experience in improving outcomes for such individuals; b. State Department of Rehabilitation Agency (29 U.S.C. 721 (a)(2)(B)); orc. Other entities with demonstrated expertise and experience in improving quality outcomes for these individuals.
Meaningful and active engagement with self-advocates and families throughout all phases and aspects of this project. In addition to the partnership requirement above, it is expected that self-advocates and family members will be fully engaged throughout the life cycle and in all aspects of this project, including in developing, testing, implementing, and scaling the two component model. Self-advocates and family members are expected to serve in various roles and capacities in the project.
Designing, identifying and implementing a range of evidence based practices and/or innovative strategies focusing on improving services in the community that support people with developmental disabilities living in the community or those moving to the community from a more restrictive setting. These strategies must improve access to and quality of community services through capacity building and scaling of evidence based and/or promising practices; reduce and mitigate the incidence of and risk factors for abuse and neglect; and support empowerment, self-determination, and self-advocacy. Such a range of evidence based practices and innovative strategies include those that:
Enhance the health and safety of individuals by increasing their independence, social capital, self-determination, community integration, productivity and participation.
Strengthen the knowledge, skills, specialization, economic/career prospects and work force stability, retention and advancement of direct support professionals.
Incentivizes the effective adoption and use of evidence based and/or promising practices related to supported decision-making, person-centered thinking, competitive integrated employment and similar strategies.
Elevates the leadership roles that self-advocacy organization, centers for independent living and other peer support networks, working together with families and others, must play in improving and assuring the quality of home and community-based services.
Building the competencies of direct support professionals and capacity of HCBS providers through a continuum of evidence based and/or innovative tools and technical assistance to improve access to and quality of HCBS. Such tools and technical assistance works towards prevention by addressing a variety of common needs, such as new employee orientation packages conveying a zero-tolerance for abuse; practices to identify and eliminate patterns or a ‘culture of abuse’ [ix] within agencies; knowledge transfer of positive behavior and augmentative/alternative communication strategies; health and disability management; and models to reduce restraint and seclusion, abuse, neglect, and exploitation, such as those that focus on situational awareness to social influences that have been shown to lead to cultures of abuse and neglect. The tools and technical assistance include those that:
Are scalable and readily available to be modified for a variety of community settings including group homes, independent living settings, and agencies that provide daily living support to people who live in their home.
Lead to evidenced based practices and other steps to prevent, monitor, and reduce the incidence of and risk factors for neglect, abuse and exploitation of individuals with developmental disabilities living in the community.
Reducing the incidence of and risk factors for abuse and neglect in HCBS by developing and implementing a coordinated system for community monitoring. This system should utilize existing infrastructure in the state and partnerships with local and state level entities to collect, analyze, and share all relevant data for developing and implementing coordinated community monitoring including methods for:
Completing on-site safety reviews.
Managing deficient practices and confirming corrections have been made by documenting evidence of implementation.
Establishing corrective action tracking systems.
Monitoring health and safety against Appendix G in the state’s HCBS waiver application or an emergency response process to review unexpected deaths. (Appendix G of the HCBS Waiver application describes the safeguards a state will take to assure the health and welfare of waiver participants: including responses to Critical Events or Incidents (Appendix G-1); safeguards Concerning Restraints and Restrictive Interventions (Appendix G-2) and medication Management and Administration (Appendix G-3) [x].
Identifying any risk or safety concerns.
Using the findings to develop, implement and improve the tools, technical assistance and other strategies employed in this project to reduce abuse and neglect within HCBS settings.
Developing and implementing data tools and evidence based practices to monitor and address health and safety of individuals with developmental disabilities who are at increased risk due to age, severity of disability, or some other high risk factor. A special feature incorporated into the monitoring system will be methods for monitoring high-risk individual, which could include health risk screening tools and/or standardized mechanisms to determine an individual’s vulnerability to potential health risks and the supports needed to enable early identification of deteriorating health. Tools can also address issues and concerns that have become common to a service provider, such as corrective action tracking systems; a database that manages and processes deficient practices and confirms corrections have been made by requesting evidence of implementation; or an emergency response process to review unexpected deaths, identify any risk or safety concerns, and complete an on-site safety reviews.
Evaluation to assess progress and determine outcomes from the project: It is expected that the project will use process evaluation techniques to analyze how the project activities are delivered to determine, among other things, the extent to which the project is being implemented as planned, how the project activities are being received by the target group, the barriers to implementation, and areas for project improvements/refinements. It is also expected that the project will use summative evaluation techniques to determine key success features of the model for replication and the effectiveness of the model in achieving project outcomes as described above.
Sustainability: An expected outcome of this project will be sustainability of the system of community monitoring and capacity building that enhances and assures the independence, integration, safety, health, and well-being of individuals living in the community. During the course of the project, efforts should be made to generate sufficient resources and strategies for organizational sustainability, financial sustainability and/or community sustainability to continue and to refine the work in the state.
DEFINITIONS OF KEY TERMS
In order to propose a model responsive to this FOA, applicants must have a clear and consistent understanding of certain key concepts and terms. For the purpose of this FOA, therefore, the following definitions and meanings apply:
Abuse: The willful infliction of injury, unreasonable confinement, intimidation, or punishment with resulting physical harm, pain or mental anguish. [xi] Assuring the Fidelity of Implementation of the Model as used in this FOA refers to the degree to which it is implemented with adherence to its key features— the key ingredients related to achieving the outcomes associated with the model. [xii]
Community Monitoring: includes activities to evaluate compliance issues and quality of home and community-based services by providers of such services, supports and other assistance. Monitoring may involve using access authority to visit and in other ways seek information from community settings, including places where people with developmental disabilities live, work and go to school by a) conducting face-to-face interviews with individuals with developmental disabilities in those settings; b) conducting at least one face-to-face interview with a staff member in those settings; 3) observing and evaluating the physical conditions of the setting; and 4) accessing and reviewing records, when appropriate, in accordance with applicable federal and state law.
Evidence Based Best Practices: rigorous study of interventions and model programs carried out with multiple populations in a variety of settings. Therefore, they are more likely to produce positive changes or outcomes for people who participate. They are based on rigorous study of the effects or outcomes of specific interventions or model programs. They demonstrate reliable and consistently positive changes in important health-related and functional measures. [xiii]Meaningful engagement of self-advocates and family members refers to such individuals and self-advocacy/peer support organizations and families/ organizations supporting families playing major roles in:
Designing, implementing, refining and assessing the model;
Training individuals, families, providers and others in such key areas as:
Being an effective self-advocate for oneself and others;
Rights and responsibilities;
Leading your own planning meeting and supporting others to do the same person;
Competitive integrated employment;
Serving on human rights committee;
Avoiding, spotting and reporting possible abuse and neglect;
Supporting individuals to lead and fully participate in their own person centered planning efforts;
Monitoring and helping to improve the quality of HCBS; and
Other related topics.
In order for such individuals and organizations to successfully carry out these critical leadership roles and responsibilities, they must be valued and well supported in their efforts. Family members should play similar leadership roles in the same capacities. The successful applicant will provide assurances and explain how the model will advance these aims.
Neglect: The failure of a caregiver to provide food, shelter, clothing, medical services, or health care for the person unable to care for self; or the failure of person to provide these needs for self as result of mental or physical inability. [xiv]
Promising Practice: A program, activity or strategy that has worked within one organization and shows promise during its early stages for becoming a best practice with long-term sustainable impact. A promising practice must have some objective basis for claiming effectiveness and must have the potential for replication among other organizations. [xv]
i. Braddock, D., Hemp, R., Rizzolo, M.C., Tanis, E.S, Haffer, L, and Wu, J. (2015). The State of the States in Intellectual and Developmental Disabilities: Emerging from the Great Recession. Washington, DC: American Association on Intellectual and Developmental Disabilities. (Data through FY 2013).
ii. Larson, S.A., Lakin, K.C., Anderson, L.L., Kwak, N., Lee, J.H., Anderson, D. (2001). Prevalence of mental retardation and developmental disabilities: Estimates from the 1994/1995 National Health Interview Survey Disability Supplements. American Journal on Mental Retardation, 106, 231-252.
iii. Larson, S.A., Eschenbacher, H.J., Anderson, L.L., Taylor, B., Pettingell, S., Hewitt, A., Sowers, M., & Fay, M.L. (2017). In-home and residential long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2014. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.
iv. Human Services Research Institute & National Association of State Directors of Developmental Disabilities Services (2014-15) Adult Consumer Survey Final Report. Accessed from: http://www.nationalcoreindicators.org/upload/core-indicators/ACS_2014-1….
v. Hiersteiner D, Butterworth J, Bershadsky J, Bonardi A. Working in the community: The status and outcomes of people with intellectual and developmental disabilities in integrated employment – Update 2. National Core Indicators Data Brief. 2016. Retrieved from http://www.nationalcoreindicators.org/upload/core-indicators/NCI_DataBr…
vi. Ng, Terrence, et.al. (2016, October 18). “Medicaid Home and Community-Based Services Programs: 2013 Program Update. Kaiser Family Foundation. Retrieved from: http://kff.org/medicaid/report/medicaid-home-and-community-based-servic…
vii. See EyesonOversightVideoSeries by Office of Inspector General, US Department of Health & Human Services. Also see separate audit reports entitled, Massachusetts Did Not Comply With Federal and State Requirements for Critical Incidents Involving Developmentally Disabled Medicaid Beneficiaries (https://oig.hhs.gov/oas/reports/region1/11400008.pdf) and Connecticut Did Not Comply With Federal and State Requirements for Critical Incidents Involving Developmentally Disabled Medicaid Beneficiaries (https://oig.hhs.gov/oas/reports/region1/11400002.asp).
viii. Application for 1915 (c) Home and Community-Based Services Waiver, § Appendix G (2014). See: CMS, Memorandum to State Survey Agency Directors, S&C-05-09, Clarification of Nursing Home Reporting Requirements for Alleged Violations of Mistreatment, Neglect, and Abuse, Including Injuries of Unknown Source, and Misappropriation of Resident Property, December 16, 2004.).
ix. Although there is a need for research in this area, available data and recent investigative journalism suggest that there is often a social and organizational culture component to incidences and a pattern of abuse/neglect/exploitation among people with disabilities. See: Thornberry, C., and Olson, K., (2005). “The abuse of individuals with developmental disabilities.” Developmental Disabilities Bulletin (33), pp. 1-19. http://www.nytimes.com/2011/03/13/nyregion/13homes.html. http://www.chicagotribune.com/news/watchdog/grouphomes/
x. Application for 1915 (c) Home and Community-Based Services Waiver, § Appendix G (2014). See: CMS, Memorandum to State Survey Agency Directors, S&C-05-09, Clarification of Nursing Home Reporting Requirements for Alleged Violations of Mistreatment, Neglect, and Abuse, Including Injuries of Unknown Source, and Misappropriation of Resident Property, December 16, 2004.
xi. CMS, Memorandum to State Survey Agency Directors, S&C-05-09, Clarification of Nursing Home Reporting Requirements for Alleged Violations of Mistreatment, Neglect, and Abuse, Including Injuries of Unknown Source, and Misappropriation of Resident Property, December 16, 2004.
xii. Fidelity Monitoring Tip Sheet, Family and Youth Bureau: https://www.acf.hhs.gov/sites/default/files/fysb/prep-fidelity-monitori…
xiii. Evidence Based Best Practice: https://www.ncoa.org/center-for-healthy-aging/basics-of-evidence-based-….
xiv. Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America. National Research Council (US) Panel to Review Risk and Prevalence of Elder Abuse and Neglect; Bonnie RJ, Wallace RB, editors. Washington (DC): National Academies Press (US); 2003. [See Appendix B: Analysis of Elder Abuse and Neglect Definitions Under State Law]
Additionally, in the 2014 OIG report mentioned above under “abuse”, the same CMS memorandum contains the following definition for “neglect”: Failure to provide goods and services necessary to avoid physical harm, mental anguish, or mental illness. (See: CMS, Memorandum to State Survey Agency Directors, S&C-05-09, Clarification of Nursing Home Reporting Requirements for Alleged Violations of Mistreatment, Neglect, and Abuse, Including Injuries of Unknown Source, and Misappropriation of Resident Property, December 16, 2004.) Contained in chart on page 5 of 2014 OIG report (See Office of the Inspector General, U.S. Department of Health and Human Services. Nursing Facilities’ Compliance with Federal Regulations for Reporting Allegations of Abuse or Neglect. December 2014. (https://oig.hhs.gov/oei/reports/oei-07-13-00010.pdf).
xv. What Are Best Practices (HHS/ACF/OCS, September 2015)