Support Brokers Research Articles

Connecticut’s Veterans-Directed Care Program Outcomes Compared to HCBS Waiver Participants: HCBS CAHPS Results

Connecticut (CT) Veterans Directed Home and Community Based Services Program (VDC) is an innovative Veterans Administration (VA) services option providing veterans at risk of institutionalization with person-centered consumer-directed long-term services and supports at home. Funded by an Administration for Community Living grant, the CT Department of Aging and Disability Services partnered with the VA, the five CT Area Agencies on Aging, and UConn Health Center on Aging (UConn). UConn researchers conducted the Consumer Assessment of Healthcare Providers and Systems in Home and Community Based Services (HCBS CAHPS) survey with VDC participants (n=36) from October 2019 through March 2020. The standardized, validated HCBS CAHPS survey, which Connecticut administers to individuals in most CT Medicaid HCBS programs, is a universal, cross-disability tool to assess/improve the quality of HCBS programs. Analyses compared VDC participants’ program experiences to survey results from individuals in the Connecticut Home Care Program (CHCP) (for older adults) (n=629), Personal Care Assistance (PCA) (n=282), and Acquired Brain Injury (ABI) (n=327) waiver programs. Notably, more VDC participants (91%) knew who their support broker was, compared to CHCP, ABI, and PCA (82%, 79%, and 72%, respectively) who knew their case manager; 91% of VDC participants gave their support broker the highest rating, compared to 66% to 74% of participants in other programs who rated their case manager. This study provides strong evidence that the CT VDC program is positively impacting veterans and that the AAAs and support brokers are effectively helping them receive the HCBS they need in a consumer-directed way.

PARTICIPANT AND CAREGIVER VIEWS OF SELF-DIRECTION OF HOME AND COMMUNITY SERVICES 15 YEARS AFTER CASH & COUNSELING

Results of the Cash and Counseling controlled experiment are now more than ten years old. This symposium, based on a recent Special Issue of the Journal of Gerontological Social Work on self direction of home and community-based services and supports for people with disabilities, begins with an overview of the status of self-direction in the United States where now over 1.1 million people are managing their own services and supports. After summarizing the six research studies in this Special Issue presenting feedback on the self-direction model from participants, their caregivers, and unpaid representatives followed by participant views on remaining unmet needs, the ideal and undesired characteristics of support brokers, and a research study to develop modules for training care managers and support brokers on person-centered planning and self-direction, papers will be presented focusing on two of these studies highlighting improvements needed in the self-direction approach if it is to become available to all persons with disabilities. The first paper is titled, “Unmet Needs Even When People Have Control of the HCBS Budget”; the second deals with the “Tasks and Characteristics of Supportive Support Brokers”; while the third paper looks at “Present Efforts and Recommendations for Training Support Brokers on the Principles, Values, and Skills to Assist People with Disabilities Who Wish to Direct Their Own Supports”. The session ends with a presentation on the program and policy implications of this research for federal agencies.

PARTICIPANT VIEWS OF THE TASKS AND CHARACTERISTICS OF SUPPORTIVE SUPPORT BROKERS IN SELF-DIRECTION PROGRAMS

This qualitative study draws on 76 ethnographic case studies with Cash and Counseling participants, examines what participants and their caregivers saw the support broker doing, and looks at what the participants found helpful and less than helpful. Participants and their caregivers saw support broker duties as Coaching, Problem Solving, Advocacy and Monitoring. Equally important was how the support broker performed these roles. Six attributes that mattered to participants were: Familiarity, Supportive Relationship, Proactive Engagement, Responsiveness, Knowldge and Cultural Friendliness. These findings from the participant and caregiver perspective have great import for the training of present and future care managers and support broker, and have implications for regulatory and even licensure requirements. These results can be a first step in constructing a quality framework for self-directed supports and services.

UNMET NEEDS IN SELF-DIRECTED HCBS PROGRAMS

Unmet Need for long-term services and supports has been linked to a variety of harmful health outcomes. One suggested strategy for ameliorating unmet need is to give participants control of the budget and let them construct individualized plans. The evaluation of the Cash and Counseling controlled experiment documented a marked reduction in unmet need when compared to traditional agency-based solutions, but it also showed significant unmet needs remained. This paper, drawing from 76 ethnographic case studies of Cash and Counseling participants, gives us an understanding of what those unmet needs are, who sees them, and what participants and their family caregivers see as possible remedies. Certain areas of unmet need identified in this study stand out. These included health-related problems, environmental issues, and the caregivers’ need for relied. The paper concludes with implications for care integration and the training of support brokers as warnings about reducing budgets.

RESEARCH CAN CHANGE PROGRAMS AND POLICY

In addition to increasing knowledge, research is meant to improve practice and policy. The papers presented in this symposium draw from the experiences and insights of actual participants and their caregivers in major government-sponsored program options for people with disabilities wanting to remain in the community. Many of these programs are administered by our Administration for Community Living. For all, ACL serves as a main source of information for people in the community. These papers give us first-hand knowledge of what participants like and what they want improved. They give us guidance on how consumers define quality; the results can guide efforts to improve program design and the training of support brokers and representatives who assist people who want to manage their own supports and services. I will give a few examples starting with the paper on the Veterans-Directed Care Program and drawing ideas from the other papers.

The Tasks and Characteristics of Supportive Support Brokers

ABSTRACTIn the United States, under the Cash and Counseling or budget authority model of self-directed personal assistance where the participant manages his or her own services and supports, the Support Broker role was established to assist and coach the participant. The support broker role grew out of a person-centered planning process where focus groups and surveys helped ascertain what potential participants wanted to help them establish a self-directed alternative. But, despite this role being described in policy guidance from the Center for Medicare and Medicaid, little research has been conducted examining the functions, activities and usefulness of this position. This study draws on 76 ethnographic case studies with early Cash and Counseling participants, examines what participants and their caregivers actually saw the support broker doing, and looks at what the participants found helpful and less than helpful. Participants and family caregivers saw support broker duties as falling into four areas: Coaching, Problem Solving, Advocacy and Monitoring. Equally important was how the support broker performed these duties. Key aspects of quality included: Familiarity, Supportive Relationship, Proactive Engagement, Responsiveness, Knowledge and Cultural Friendliness. These findings can provide the basis for establishing quality indicators for self-direction.

Unmet needs in self-directed HCBS programs

ABSTRACTUnmet need for long-term services and supports has been linked to a variety of harmful health outcomes. One suggested strategy for ameliorating unmet need is to give participants control of a budget and let them construct individualized plans. The evaluation of the Cash and Counseling controlled experiment (CCDE) documented a marked reduction in unmet need when compared to traditional agency-based solutions, but it also showed significant unmet needs remained. This paper reanalyzes 76 case studies from the CCDE to, for the first time gain an understanding of what those unmet needs are, who sees them, and what participants, caregivers and support brokers think might reduce this problem. Using a collective or multiple case study approach to understand this phenomenon, unmet needs were sorted into five categories using real life experiences of respondents. Unmet needs for assistance in managing the employer and budget tasks of self-direction were also captured.This paper discusses situations where the clinician researchers documented needs that were not expressed by the care recipients and provides a picture of where and why unmet needs remain.The paper concludes with strategies for reducing unmet needs and training future social workers.

PROTOCOL: Personal Budgeting Interventions to Improve Health and Social Care Outcomes for People with a Disability: A Systematic Review

PROTOCOL: Personal Budgeting Interventions to Improve Health and Social Care Outcomes for People with a Disability: A Systematic Review

Multi-State Survey of Support Brokers in Cash and Counseling Programs

The purpose of this study is to learn how support brokers (program counselors) carry out and are prepared for their roles in participant-directed programs. More specifically, this study looks at support brokers’ self-perceived roles, training, educational backgrounds, and how well they feel they are prepared for their jobs with Cash and Counseling programs. This study involves two phases of data collection. First, a 20-item survey was sent electronically to support brokers in three states ( n = 138) in 2011. Descriptive statistics and t tests were used for the analysis. The second phase involves follow-up telephone interviews ( n = 15) with a convenience sample who agreed to participate. Results showed an inconsistency in role definitions and types of training between and within individual states. Moreover, educational backgrounds had a significant influence on the level of support brokers’ perceived preparedness for given tasks. Finally, this study identifies areas that support brokers believe will help improve their performance.

Dodecaphony: Enacting Support Brokerage in the Twelve Cash & Counseling Expansion States

Support brokers are entities that provide information and assistance to self-directed clients in Medicaid waiver programs. Although all Cash & Counseling programs have support brokerage, each state has a great deal of liberty in determining how those functions are carried out, who provides those activities, which functions are emphasized and how responsibility for support broker tasks coordinates with other support activities. In this article, we map out the various ways in which states have operationalized the support brokerage concept. Differences in title, qualifications, training, hiring preferences, and caseload are described and further directions for research are suggested.

Building blocks for real-time advice and information for social care and housing

AbstractOver the last few years the need and demand for advice and information in the area of social care and housing has gained unprecedented momentum and been an integral part of numerous policy papers and reports. The need for good quality, trusted and reliable advice, and information in an area, which most citizens and even care and housing professionals find too complex to navigate is undeniable. It is not surprising when you consider the social care system is made up of a labyrinth of guidance, rulings, directions, and legislation dating back to 1948. Government departments and policy-makers have committed more than a few words to what future advice and information should look like. However is reinventing the wheel necessary? There already exists excellent examples of advice, information, and support at its best; FirstStop Advice, Find Me Good Care, and My Support Broker are just three which if developed and harnessed together would readily fulfil the need and bring policy think into reality. The co...

Person-centered Planning and Participant Decision Making

It is a humbling experience to try to capture those critical elements in the Patient Protection and Affordable Care Act (P.L. 111-148) (now more commonly called the Affordable Care Act [ACA]) that have the most import for our profession of social work. I focus my remarks on one theme that is woven throughout health care reform: person-centered planning and participant direction. Whereas that theme appears in both the acute and long-term care portions of the legislation, here I zero in on the provisions dealing with long-term supports and services in the community. Participant-directed services are long-term care services that help people of all ages, across all types of disabilities, to maintain their independence and determine for themselves what mixture of personal care services and supports works best for them. Sometimes these are referred to as consumer-directed or self-directed services. Under the participant-directed model, individuals have control over who helps them with the basic, personal activities of daily living (ADLs) such as bathing, dressing, and getting out of bed (employer authority) and how their funds are used (budget authority). Within the constraints of their budget, they can purchase any combination of goods, services, and human assistance that meets their personal assistance needs and helps them stay independent in the community. If they need help in managing, they can appoint an unpaid family member or friend to be their representative; and they have readily available support services to help them handle bookkeeping, taxpaying, and check-writing responsibilities (financial management services) and to develop person-centered plans, find resources, develop backup plans, meet training needs, and so forth (support broker or counseling services). This approach not only meets present and future needs for flexibility and choice, but also (under the Cash & Counseling demonstration [see http://www. bc.edu/schools/gssw/nrcpds/cash_and_counseling. html]) has proven itself under rigorous comparative effectiveness testing. Here is a summary of what the research, conducted by Mathematica Policy Research, provides: * improved access; * improved quality of care: * increased satisfaction, * reduced unmet needs, and * same or better health outcomes; * caregiver benefits; * controllable costs; and * the potential for reduced nursing facility usage. Clearly, interest in participant direction is increasing. The National Survey of Participant Direction Programs, which Boston College's National Resource Center for Participant-Directed Services (NRCPDS) is completing, shows that all states have at least one program offering employer authority, and 41 states have at least one program with the budget authority option. This movement will only expand. In 2003, AARP's Public Policy Institute released a survey in which they asked a representative group of members (over the age of 50 years) how they would like to receive services if, in the future, they needed help in basic ADLs like bathing, dressing, or getting out of bed (Gibson, 2003). Seventy-five percent indicated that they would prefer managing for themselves over receiving care from agencies. Furthermore, no one needs to remind us of the increasing diversity of our nation's older population. Between 1990 and 2030, elders in four ethnic groups are expected to grow from 14 percent to 25 percent of the over-65 population. Our nation is diverse in terms of race, gender, ethnicity, sexual orientation, functional ability, and cognitive ability, to name but a few dimensions. We need a system that is flexible. Let me repeat, it is clear that one size does not fit all. Participant direction allows individuals and families to tailor supports to their unique needs and preferences. No wonder the 2008 Commonwealth Fund Survey of Long-Term Care Opinion Leaders (Miller, Mor, & Clark, 2008) found that 61 percent of 1,147 leaders responding favored expansion of participant direction efforts like Cash & Counseling as a potential strategy for reform of publically funded services. …

Personalisation, support brokerage and social work — what are we teaching social work students?

The authors describe how social work students on placement at the Realife Trust Student Unit have been able to explore the potential of support brokerage to promote self-directed support by disabled people and family carers. The students complete brokerage training as part of the placement and are required to compare and contrast the key competencies required by the General Social Care Council with the knowledge base and job description of support brokers defined by the National Brokerage Network in the UK. Lead author, Tony Phillips argues that brokerage provides an opportunity for the social work profession to return to its practitioner roots and reject the aberrations of the care management model as having little or no relevance to the development of a social care system based on the policy of personalisation. Three social work students from three different cohorts of the unit provide their own first-hand accounts of the challenges involved and insights gained.

Dodecaphony: Enacting Support Brokerage in the 12 Cash & Counseling Expansion States

Support brokers are entities that provide information and assistance to self-directed clients in Medicaid waiver programs. Although all Cash & Counseling programs have support brokerage, each state has a great deal of liberty in determining how those functions are carried out, who provides those activities, which functions are emphasized and how responsibility for support broker tasks coordinates with other support activities. In this article, we map out the various ways in which states have operationalized the support brokerage concept. Differences in title, qualifications, training, hiring preferences, and caseload are described and further directions for research are suggested.

Supporting People With Disabilities in Managing Individual Budgets

Nationwide people with disabilities are self-directing their long-term care supports through individual budgets. Because these individuals may rely on a "support broker" to assist them in making and executing decisions regarding their budgets, the interactions between the participant and the support broker can influence participant autonomy. Massachusetts piloted a program for 14 participants to receive individual budgets for home and community-based services. Central to this pilot were the participant-designated support brokers, including home care case managers and peer advocates. Analysis of data on participants and support brokers indicated that the support brokers struggled with when, how, and how much to assist participants to self-direct. Case managers or other providers assuming the support broker's role will need proper training if they are to respond skillfully to challenging situations self-direction may bring.

The Emergence of the Independent Support Broker Role

A key element in the personalisation of health and social care is the upfront allocation of a budget to disabled and older people which they can use to obtain the supports they require. The benefit of this arrangement in increasing user choice and control will not materialise unless recipients can either acquire or access the skills of brokerage needed to plan and arrange their supports. The independent support broker is one important response to this need. However, the role needs to match the intentions of personalisation and avoid the undesirable characteristics that many social care users associate with the term ‘professional’. This raises specific questions about the definition of the role and training requirements of brokers, and broader themes which are explored with reference to the findings from two recent projects undertaken by the National Development Team for Inclusion. The second of these projects was commissioned by Skills for Care London, and led to a set of proposals for the training and accreditation of support brokers.

Going for Brokerage: A Task of 'Independent Support' or Social Work?

It is argued that for the agenda to ‘personalize’ social care in the UK to be successful, adequate systems of support brokerage need to be in place. Where brokerage is situated organizationally and ideologically is not inconsequential, both in terms of the accountability, profile and quality of the ‘brokers’ and the extent to which service users can feel properly in control of their own care or support. Many involved in support brokerage argue that independence from statutory bodies is a key principle. However, models of support brokerage have been suggested that propose brokerage as a possible function of the statutory social care sector. The paper traces how and why the ‘new’ language of brokerage has emerged in official discourses of adult social care. It also discusses the various ideas about what brokerage is and who is supposed to undertake it. It is considered whether support brokerage should be regarded as a form of social work, which is not currently the case. Were independent support brokerage to expand its role in the adult social care system, the question would arise of where that would leave social work with adults. These developments expose conflicts and tensions in New Labour’s modernization agenda.

Self-determination and independent support brokerage: creating innovative second-level supports.

Self-determination and independent support brokerage: creating innovative second-level supports.

Freedom, Support, Authority, and Responsibility

The professional direction of the lives of individuals with developmental disabilities is giving way to self-determination. This values-based movement relies on philosophical, managerial, and personal commitment to inclusive policy making, independent support brokerage, and the shifting of resource control to individually managed budgets. The Robert Wood Johnson Foundation (RWJF) National Program in Self-Determination is facilitating change through the support of "learning community" grants to self-advocacy organizations, to Arc, and to others (e.g., University Affiliated Programs). Multiyear implementation grants have been made to 29 states, and a longitudinal evaluation is underway. Local implementation is demonstrating creativity in establishing new tools for self-directed management of resources, listening to people, and reinvesting in communities.