Intermediary Services to Assist People With Disabilities to Implement Individualized Funding Plans: A Rapid Systematic Review

Abstract

A systematic review was conducted to describe, and evaluate the effectiveness and cost-effectiveness of, intermediary services to support people with a disability to implement individualized funding plans. We included six records, including one subanalysis of randomized trial data, three qualitative studies, and two systematic reviews (reporting on 73 and 18 studies, respectively). No studies directly compared “consumer-directed plan plus intermediary services” to “consumer-directed plan with no/alternative intermediary,” so effectiveness of these interventions is uncertain. There is qualitative evidence from the perspective of disability planners and workers that intermediary interventions are important enablers of successful plan implementation. There is also qualitative evidence from consumer and family perspectives that external support is required to successfully navigate self-directed systems and that strong, trusting, and collaborative relationships with both paid and unpaid individuals in the person’s support network were facilitators of successful plan implementation. There was evidence of disabling practices and attitudes among some support agencies, resulting in coordinators being very risk averse in order to safeguard their clients. Suggestions for future research include carefully planned and ethically robust comparative trial designs, clear description and consistent delivery of interventions, and long-term evaluation of impact. The protocol was published on PROSPERO (CRD42020177607).

Keywords

adult human services advocacy self-determination

Services and supports for people with a disability have historically been delivered via institutionalized services or agencies, with a focus on medical needs (Benoot et al., 2021). In recent years, however, there has been a significant shift toward community-based health and social care services, including assistance with personal hygiene, dressing and feeding, or general life skills such as shopping, keeping active, working, and social participation with the service user placed at the center of decision-making and service delivery (Malley et al., 2012). This has led to a policy imperative that people with all disabilities should be autonomous and self-determined members of society (Fleming et al., 2019).

Individualized, or self-directed, service plans aim to facilitate empowerment, independence, and self-determination for people with disabilities. They enable the individual, and/or their family/caregiver, to plan, select, manage, distribute, and organize their own supports (Lakhani et al., 2018). They are now widely used in the United Kingdom, Ireland, Europe, Canada, and the United States. In the United States, they are known as Participant (or Consumer)-Directed Services (Sciegaj et al., 2016), and in the United Kingdom, Self-Directed Support (Harkes et al., 2014). These models have been consistently shown to positively affect participant satisfaction, and there is some evidence that they improve quality of life and sense of security (Fleming et al., 2019).

There are four main ways that people can self-direct their plan:

Open/user-led models, in which the budget holder is allocated cash payments which they can spend as they wish to support their needs or achieve their goals;

Planned/budgeted/managed models, in which the budget is paid to a host agency or provider who makes purchases on behalf of the budget holder for services or items included in an agreed plan;

Brokerage models: a third-party organization takes responsibility for overseeing administrative tasks and providing support, guidance or information to budget holders so that they can plan, arrange and manage their services and supports. This can include helping to develop an individual plan, establish a circle of support, negotiate costs with service providers, or commission bespoke services if none are available (Fleming et al., 2019).

Hybrid models, in which people can choose to use elements of open, planned and/or brokerage models.

All except Option 1 involve the use of an intermediary service, which some consumers need to assist them to understand and implement their individual plan, connect them to community or mainstream services, mitigate or manage crises, and build the person’s own capacity for self-direction and independence. In the United Kingdom, the National Audit Office has cautioned that if a personal budget is put in place without adequate support, information, or alignment with a user’s circumstance, it may not improve individual outcomes (Martinez & Pritchard, 2019).

For those who only require accurate and accessible information to support them to make informed choices, this may be provided by an advisory board (which can consist of family, friends, or other trusted individuals) or a dedicated officer (Harkes et al., 2014; Lombe et al., 2016). For those who need assistance with administration and financial management, a fiscal intermediary (Cook et al., 2004) may be engaged. Alternatively, a support broker (Timberlake et al., 2014) may be engaged to work with the person with a disability to negotiate with, coordinate, and hire professional support on their behalf, or research options within the local community to fulfill the goals of the plan. While these two services are sometimes conflated, it is considered important to maintain the independence of the brokerage/planning function from fiscal services to avoid conflicts of interest. This allows consumers (and their family or carers) to use “payroll” services without feeling obliged to use the same provider for planning and/or monitoring (Fleming et al., 2019).

These services are now a required element for any state in the United States wishing to set up a self-direction program option under Medicaid (U.S. Centers for Medicare and Medicaid Services, n.d.) which state “a supports broker/ consultant/ counsellor must be available to each individual who elects the self-direction option.” Guidelines in the Affordable Care Act (U.S. Government Publishing Office, 2014) further state that “If there is no support broker/agent required or chosen, the person must have training in acting as his/her own support broker” (Sebelius, 2014). A similar system applies in the Netherlands, where it is a program requirement for the user to have access to information and advice through an independent support broker, who can be a professional (such as a social worker) or a peer and the social insurance bank can manage employer responsibilities on behalf of consumers (Alakeson, 2016). In both countries, the consumer is not charged for the service, and advice and information must be independent of service providers as well as the initial assessment process. In Germany, however, it is an expectation that informal caregivers provide this, and in the UK legal and financial support is self-funded (Alakeson, 2016).

In Australia’s National Disability Insurance Scheme (NDIS) intermediary services are referred to as “Support Coordination,” which is organized into three different levels depending on the level of expertise and intensity of support the participant requires. These are Support connection; Coordination of supports; and Specialist Support Coordination (National Disability Insurance Agency, 2019). In the latter, the specialist may be an allied health professional or developmental educator; however, the first two levels may be delivered by NDIS staff/contractors (including specialist planners, Early Childhood Early Intervention services, community connectors in remote regions, Local Area Coordinators) or external providers (e.g., hospital discharge officers, recovery coaches for consumers with psychosocial disability, and justice liaison officers).

This rapid systematic review aimed to describe and, where possible, evaluate the effectiveness and cost-effectiveness of different interventions to implement individualized plans for people with disabilities. The specific review questions were as follows:

What are the key components of intermediary plan implementation models; and

What evidence exists regarding the effectiveness and cost-effectiveness of intermediary plan implementation services?

Method

This review used a “rapid review” approach, which allows an overview of evidence in a short time (Wright & Bragge, 2018). Whereas standard systematic reviews can take up to 2 years to complete, rapid reviews seek already synthesized research evidence and, where these are not available, high-quality or recent primary studies. Rapid review processes are similar to those used in systematic reviews, including establishing a search strategy, stating inclusion and exclusion criteria for literature screening and selection, data extraction, quality appraisal, and a synthesis of findings (Borg et al., 2019). The review protocol was registered with PROSPERO (CRD42020177607). The Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) was used as a reporting framework.

Search Process

An initial limited search of PubMed, MEDLINE, and ASSIA (Applied Social Sciences Index and Abstracts) was undertaken to identify articles on the topic. The text contained in the titles and abstracts of relevant articles, and the index terms used to describe the articles were used to develop a full search strategy for report the name of the relevant database (see Appendix S2). The search strategy, including all identified keywords and index terms, was adapted for each included information source. The reference list of all studies selected for critical appraisal was screened for additional studies.

We searched The Cochrane Library, The Campbell Collaboration, Social Systems Evidence, ASSIA (Applied Social Sciences Index and Abstracts), EmBase, PubMed, PsycINFO, and Google Scholar. A search strategy with four strings was used to yield relevant sources. Below is the search strategy applied to the PubMed database, conducted on March 26, 2020, and repeated on April 12, 2021:

Disab* OR impair* OR disorder

Coordinat* OR “case manage*” OR “case work*” OR plann* OR broker* OR support* OR intermed* OR partner

Effect* OR cost-effect* OR evaluat*

“Quality of Life” OR Satisf* OR Independen* OR “daily living” OR particip*

Limits applied: Systematic Review or Randomized Controlled Trial or clinical trial, published from 2010 to 2020, in English.

All database searches were conducted between March 26 and April 2, 2020, and a repeat search was conducted using PubMed on April 12, 2021, to check if any relevant papers were published in the interim 12 months. In addition, we hand-searched references from all relevant papers and found 30 references dated on or after 2010. The full text of all 30 references was retrieved and considered; however, no additional studies were included in this systematic review.

Screening and Selection of Studies

One reviewer (I.R.) screened citations against the inclusion and exclusion criteria listed below. Potentially relevant studies were retrieved in full and assessed in detail against the inclusion criteria by two independent reviewers (I.R. and L.O.B.). Any disagreements that arose between the reviewers at each stage of the study selection process were resolved through discussion.

Inclusion criteria

Primary aim: Described or evaluated intermediary interventions designed to facilitate individual plan implementation for people with disabilities (any age). Outcomes of interest were quality of life, consumer satisfaction, and measures of independent living or participation. For cost-effectiveness, we planned to compare data that compared the specific model with any other model.

Publication type: For Question 1 (which aimed to collate descriptions of intermediary plan implementation/support models), we considered published case series or case studies as well as descriptions (e.g., reports and website text) of support models.

For Question 2 (regarding the effectiveness and cost-effectiveness of these service models), we considered systematic reviews and both experimental and quasi-experimental study designs including randomized controlled trials, non-randomized controlled trials, before and after studies, and interrupted time-series studies. In addition, comparative observational studies including prospective and retrospective cohort studies were considered for inclusion.

Exclusion criteria

Studies published prior to 2010 (given the recent advances in self-direction policy and practices for people with a disability) and in a language other than English.

Conference or dissertation abstracts, book chapters, and discussion/conceptual/protocol papers without participant data.

Assessment of Methodological Quality

Eligible studies were critically appraised by one reviewer (L.O.B.) at the study level for methodological quality in the review using checklists available through CASP (Critical Appraisal Skills Programme, 2018). Although one paper was mixed method in design, the major methodology was qualitative; hence, it was rated against the qualitative checklist.

Data Extraction

Data were extracted from studies included in the review by both reviewers. We extracted specific details about the populations, study methods, interventions, funding sources, eligibility criteria for service, the provider of the service, and outcomes of significance to the review objective.

Analysis

The absence of comparative trials and heterogeneity of the review results precluded a quantitative meta-analysis. The output of the review is therefore a narrative summary of findings, focused on their contribution to each research question. We were unable to use the Grading of Recommendations Assessment, Development and Evaluation (GRADE) for quantitative data due to the diverse nature of the available studies, and data precluded the possibility of a meta-analysis.

Results

A total of 5,042 records were identified across all searches; 56 were duplicates and removed automatically using Covidence, an online systematic review tool (Veritas Health Innovation, n.d.). The abstracts of the remaining 4,986 records were screened by one reviewer (IR), with 4,959 excluded at this stage. The remaining 27 full texts were screened by two reviewers (L.O.B. and I.R.) and a further 21 were excluded as they did not describe or evaluate an intermediary plan support intervention. Figure 1 illustrates this process using a PRISMA flow diagram.

Figure 1.

PRISMA flow diagram for rapid review.

Of the six remaining, four peer-reviewed papers described either the structure of models or the key activities performed by intermediary services, which provided useful insights into how they had been implemented. Two systematic reviews, one focusing on facilitators of service users’ engagement and choice-making (Lakhani et al., 2018) and the other on the effectiveness of individualized funding interventions, but not specifically intermediary services (Fleming et al., 2019), were included as both provided syntheses of qualitative data relating to either consumer/family and/or staff perspectives of these services. None of the studies included in either review directly compared “consumer-directed plan plus intermediary services” with “consumer-directed plan with no/alternative intermediary,” and we found no comparative studies published after these reviews. Characteristics of included studies are summarized in Table 1.

Table 1.

Characteristics of Included Studies Related to Support for Implementing Individualized Funding Plans.

Reference	Type of study/method	Studies included	Participant characteristics
Fleming et al. (2019)	Systematic review	73 (four quantitative studies, 66 qualitative, three mixed methods)	People with disabilities in receipt of individualized funding (data for 14,000 people)
Lakhani et al. (2018)	Systematic review	18 (three systematic reviews, 12 qualitative, two mixed method, one cross-sectional)	People (or their family/carers) in receipt of self-directed disability services and supports (total number of participants unclear)
Harry et al. (2017)	Quantitative (secondary analysis of subgroup data from randomized controlled trial)	N/A	456 participants (or their proxies) ages 18 to 30 years randomized to treatment groups with the opportunity to receive Cash and Counseling or control groups eligible for agency-based care (Florida, Arkansas, New Jersey)
Bogenschutz et al. (2019)	Qualitative (online survey and semi-structured interviews and focus groups)	N/A	35 service directors, 113 Case Managers and their supervisors who provided service for individuals with intellectual and developmental disabilities (Virginia)
Collings et al. (2018)	Qualitative (focus groups)	N/A	99 planning practitioners for people with cognitive disability and complex support needs. (Metropolitan and regional locations in New South Wales)
Mahoney et al. (2019)	Qualitative (secondary analysis of ethnographic case study data collected during randomized controlled trial)	N/A	76 case stories developed from in-home interviews of a representative sample of participants randomized to Cash and Counseling group, their caregivers, and when possible, support brokers (“care units”) (Florida, Arkansas, New Jersey)

Quality Appraisal

One of the two systematic reviews (Fleming et al., 2019) was exceptionally rigorous and fulfilled all relevant criteria on the CASP Systematic review tool. The other (Lakhani et al., 2018) however had a weaker and narrower search strategy and unclear assessment of the quality of included articles. The one randomized controlled trial (Harry et al., 2017) presented secondary data analysis of data collected between 1999 and 2003 during the Cash and Counseling Demonstration and Evaluation (CCDE) randomized control trial in the United States which compared “Cash and Counseling” with “agency-based care as usual.” They specifically focused on a subgroup of participants age between 18 and 30 years; however, there were significant dropouts in the intervention group (25% in one state), which was not explained and no blinding of data collectors. The qualitative studies included were generally of good quality, although none provided clear statements regarding the relationship between researcher and participants. Results are summarized in Table 2 in the Supplemental Material.

What Are Key Components of Intermediary Services to Assist People With Disabilities to Implement Individualized Funding Plans?

Of the four original research papers, two described the United States “Cash and Counselling” model (Harry et al., 2017; Mahoney et al., 2019), one described Case Management services for people with intellectual and developmental disabilities (Bogenschutz et al., 2019), and one explored planning supports for people with complex support needs across disability, mental health, alcohol and other drugs, housing, and criminal justice (Collings et al., 2018). Components are summarized in Table 3 (Supplemental Material).

Common to all models was the provision of information about how to manage the self-directed plan, and referral or direct linkage to services in the community. All highlighted the need for the intermediary to know about or find the right service, as people with complex needs may have had negative past experiences when attempting to access services. All except one (Collings et al., 2018) specifically included ongoing monitoring as part of the role. Assistance with financial management was not mentioned in two of the studies, but was explicit in the “Cash and Counselling” studies. This model includes services delivered by a Fiscal intermediary who helped manage the budget, wrote checks for hired support workers, and took responsibility for other payroll duties, such as withholding taxes.

The manner in which intermediary services were delivered was most important, with participants in one of the Cash and Counseling studies (Mahoney et al., 2019) valuing familiarity, proactivity, cultural friendliness, responsiveness, and supportive relationships with their broker. This was echoed from the provider’s perspective, with building rapport, avoiding shortcuts and rushed approaches to decision-making, and supporting the person to learn being key priorities (Collings et al., 2018).

What Do We Know About the Effectiveness of Intermediary Services?

We did not identify any comparative studies that experimentally compared an intermediary service intervention against an alternative (or no service) in terms of consumer outcomes or cost-effectiveness. Evaluation typically examined consumers’ and providers’ perceptions of benefit or facilitators of successful plan implementation.

From consumers’ perspectives, Fleming et al., 2019 systematic review mapped qualitative data from 66 qualitative and three mixed methods studies. They found qualitative evidence that strong, trusting, and collaborative relationships with both paid and unpaid individuals who formed the person’s network of support were facilitators of successful plan implementation. Consumers particularly valued assistance with information sourcing, recruitment of support workers, network building, and support with administrative and management tasks. The systematic review by Lakhani et al. (2018) included three review articles and 15 original studies (12 qualitative, two mixed methods, and one cross-sectional survey) and similarly concluded that independent third-party advisors supported informed decision-making among consumers and their families regarding budgeting or hiring of support workers. The authors concluded that service users and families need external support if they are to successfully navigate self-directed systems, plan and manage their budgets, and determine how they will allocate their funded resources among their choice of supports and services.

From the perspective of disability service workers, Fleming et al. (2019) concluded that “support and other human resources . . . such as intermediary services, community integration, and innovative/creative supporters” was a facilitator of successful plan implementation.

Adverse Effects

Fleming et al. (2019) found “extensive evidence of disabling practices and attitudes among some funding bodies and support agencies” which appeared related to fears regarding misuse of funds or other fraudulent activities by people with a disability or their network of support. This resulted in a tendency for planners or coordinators to be very risk averse in order to safeguard their clients. The qualitative data showed that fears were generally alleviated after successful plan implementation, and the establishment of strong networks of paid and/or unpaid support. No other harms associated with using an intermediary service were found in any other papers.

Discussion

This review is, to our knowledge, the first to describe and evaluate intermediary services to support people with a disability to implement individualized funding plans. We found no quantitative data comparing intermediary services with either “no service” or an alternative model, so their effectiveness (and cost-effectiveness) is uncertain.

We found consistent qualitative evidence from two systematic reviews that consumers and their families believe independent intermediary services supported them in informed decision-making, information sourcing, budget planning and management, hiring of support workers, network building, and administrative and management tasks. This is mostly consistent with consumer ratings from the only large-scale randomized controlled trial, the CCDE (Brown et al., 2007), which compared a new self-directed funding model (Cash and Counseling) to traditional agency-based service in three U.S. states. In this trial, which was conducted from 1998 to 2002, consumers randomized to the new model (N = 3047) were required to use counseling services (which covered how to set up their spending plans and how to recruit and train support workers); however, fiscal intermediary services were optional. Participant satisfaction with assistance to develop their spending plan was high (varying between 62.1% in the Florida participants age >60 years to 87.4% in Arkansas 18–64 years group) although lower ratings were achieved for recruiting and training workers (28.3%–57%). Interestingly, 93% chose to use fiscal intermediary service and were very satisfied with them. In all participating states and all age groups, 85%–95% of users of intermediary services found them to be helpful.

We also found evidence that some funding bodies and support agencies constrained consumers by being overly protective and risk averse, especially during early stages of plan implementation. This worrying finding was also evidenced in the Personal Outcomes Evaluation Tool (POET; Think Local Act Personal, 2017) results for 4,300 adults in receipt of personal budgets and personalized care and support in the United Kingdom, where only half (51%) of consumers said they could decide how the money in their personal budget was spent.

Our finding of that disability service workers regard intermediary services and community integration efforts as a key enabler of successful plan implementation is also supported by the literature. Fleming, 2016 research brief (Fleming, 2016) of four pilot individualized funding initiatives in Ireland found that “the availability of a ‘circle’ of natural supports provided significant benefits for consumers in terms of helping them learn to actively engage with the community, especially when learning new social, decision-making and independent living skills.” Where this was absent, intermediaries (e.g., organizational staff, broker, key worker, or mentor) identified and engaged with potential advocates. Those who performed this role best were described as

practical, amenable, friendly and encouraging in their approach. Other personal attributes that were important included having: vision; innovation; personal experience of disability; a willingness to challenge stakeholders and an active role in the community. Essential for all stakeholders was an appreciation of an individual’s abilities, passions and interests.

For populations who struggle to access online or written information, such as older people, those with mental health issues, or those with low literacy, these services are likely to be particularly important. A UK study exploring the experiences of using self-directed support and personal budgets for older people and those with mental health issues interviewed 69 scheme participants and carers, 40 practitioners and managers, and 12 support provider organizations, including five user-led organizations (Newbronner et al., 2011). They found that it was usually the time spent discussing their plan with their social worker, community psychiatric nurse, or support provider organization that was most helpful in its implementation. Community advocates have flagged that vulnerable populations, particularly those experiencing homelessness and/or mental health disability, are in many cases unable to appropriately engage with the supports identified in their plan without assistance (Kenyon, 2018).

Similarly, Australian parents of children with complex disabilities such as autism have highlighted the importance of this service when seeking supports

The only way to find quality services is via a good support coordinator, friends in the same situation or a lucky Google search. Now the NDIS has an up-to-date service provider list, but it still takes a lot of time and luck to find services that meet your needs. (Livanos, 2018)

and “I like that [broker] takes care of it, it is overwhelming to me . . . stressful situations get me upset, I could not do it [manage child’s plan] without help” (Timberlake et al., 2014). This preference was also noted in another Australian study (Valentine, 2010) which concluded that families want the “best” service or provider and prefer to rely on experts and professionals to decide what is “best.” A UK study of 111 young people with progressive disabling conditions, their parents, adults, and older people with fluctuating or sudden support needs (Rabiee & Glendinning, 2010) also found that many felt they did not have access to information that could enable them to make “informed” choices.

Limitations

Rapid reviews, by their nature, can lack the detail that traditional systematic reviews and a more detailed review might yield differing results. To mitigate this, the author of the most recent and comprehensive review (Dr Padraic Fleming) was contacted, and he concurred that no quantitative studies exist comparing “consumer-directed plan plus intermediary services” to “consumer-directed plan with no/alternative intermediary.”

We restricted our search to publications in English, which may mean we omitted relevant studies published in other languages. In addition, only one author conducted quality appraisals due to resourcing available to conduct the review.

Implications for Policy Development

Whilst some individuals may be “consummate consumers” (Alakeson, 2016), others will need greater assistance in implementing their plan due to isolation from their local community, lack of experience in navigating the funding system, or the ability to effectively procure and manage their own services. Ideally, policy should ensure that the level of support provided is flexible, informed by the consumer’s current needs and access to family or peer support, and should respect the individual’s choice and control. It may be helpful to conceptualize this as a two-tier system, as described by Carter Anand et al. (2012):

Professionally assisted: service users receive short-term assistance from case managers, coordinators, or brokers to access funding and implement their plan. The professional/agency/broker may also assist with decisions regarding management of support workers, purchasing of services or goods necessary to meet their needs and goals. Optional independent professional counseling and advice may be available, separately from the funding, to assist the service user. The “Cash and Counselling” model is an example of this type of service.

Professionally monitored: service users receive guidance over time from care managers or coordinators, who are also responsible for monitoring services according to the approved plan. Health professionals usually play a key role in the assessment and care planning processes. The “Direct Payments” (UK) program is an example of this, in which local councils (England and Wales) or Health and Social Care Trusts (Northern Ireland) make personal budgets available then provide a case manager (social worker or nurse) to develop and monitor the plan.

Finally, policy should guarantee that advice and information should remain independent of service providers as well as the initial assessment process. In the United States, the Centers for Medicare and Medicaid Services (Kako et al., 2013) have articulated the following core characteristics of conflict-free intermediary services (referred to as case management):

Responsibility for providing case management services is separated from responsibility for the provision of direct services and supports.

Case managers are not employed by an entity providing services.

Case managers are not responsible for determining individual funding levels.

Recommendations for Research

This review has highlighted the lack of robust effectiveness data on what is a complex social intervention. This is due to the inherent ethical and logistical challenges associated with collecting quantitative data via controlled comparative methods. We therefore suggest that future pilot trials include methodologically rigorous evaluation plans before rollout. Where it is unethical or unfeasible to randomize participants, observational study designs, often referred to as comparative effectiveness research (CER) (Sox & Goodman, 2012), may be used to directly compare the results of different interventions. While these designs lack the statistical purity of randomized controlled trials, results can be both scientifically rigorous and more relevant to consumers and decision makers as long as comparison groups are either matched at baseline or controlled for in analysis. The authors also suggest realist evaluation methods which allow for real-world evaluations of complex interventions within complex systems (HM Treasury, 2020).

Conclusion

Intermediary services are widely used internationally, but seldom described in detail or evaluated. Although they have not been tested experimentally, existing qualitative research suggests they are valued by consumers and are a major facilitator of successful plan implementation, providing support agencies avoid overly risk-averse attitudes. A clearer understanding of their effectiveness for different populations would require carefully planned and methodologically robust comparative trial designs, clear description and consistent delivery of interventions, and long-term evaluation of impact.

Supplemental Material

sj-docx-1-dps-10.1177_10442073221130529 – Supplemental material for Intermediary Services to Assist People With Disabilities to Implement Individualized Funding Plans: A Rapid Systematic Review

Supplemental material, sj-docx-1-dps-10.1177_10442073221130529 for Intermediary Services to Assist People With Disabilities to Implement Individualized Funding Plans: A Rapid Systematic Review by Lisa O’Brien and Ivana Randjelovic in Journal of Disability Policy Studies

Supplemental Material

sj-docx-2-dps-10.1177_10442073221130529 – Supplemental material for Intermediary Services to Assist People With Disabilities to Implement Individualized Funding Plans: A Rapid Systematic Review

Supplemental material, sj-docx-2-dps-10.1177_10442073221130529 for Intermediary Services to Assist People With Disabilities to Implement Individualized Funding Plans: A Rapid Systematic Review by Lisa O’Brien and Ivana Randjelovic in Journal of Disability Policy Studies

Supplemental Material

sj-docx-3-dps-10.1177_10442073221130529 – Supplemental material for Intermediary Services to Assist People With Disabilities to Implement Individualized Funding Plans: A Rapid Systematic Review

Supplemental material, sj-docx-3-dps-10.1177_10442073221130529 for Intermediary Services to Assist People With Disabilities to Implement Individualized Funding Plans: A Rapid Systematic Review by Lisa O’Brien and Ivana Randjelovic in Journal of Disability Policy Studies

Footnotes

Acknowledgements

The authors thank Assistant Prof. Claire Harris (Research and Evaluation, NDIS), Bridey Sanders and Deanne Williams (Provider and Markets, NDIS), and Hannah Simkin and Fiona Cromarty (Partner Program, NDIS) for input into the protocol for this review.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Lisa O’Brien

References

Alakeson

(2016). Self-direction in long-term services and supports: International differences and current challenges. Public Policy & Aging Report, 26(4), 143–148. https://doi.org/10.1093/ppar/prw018

Benoot

Dursin

Verschuere

Roose

(2021). Lessons from Ricoeur’s “capable human being” for practices of personalisation in three European countries. Disability & Society, 36(36), 36–36. https://doi.org/10.1080/09687599.2020.1769561

Bogenschutz

M. D.

Dinora

P. A.

Johnson

K. R.

(2019). Case management workforce supporting people with intellectual and developmental disabilities: Indications of a new frontier of the workforce crisis. Intellectual and Developmental Disabilities, 57(57), 57–57. https://doi.org/10.1352/1934-9556-57.6.499

Borg

Boulet

Smith

Bragge

(2019). Digital inclusion & health communication: A rapid review of literature. Health Communication, 34(34), 34–34. https://doi.org/10.1080/10410236.2018.1485077

Brown

Carlson

B. L.

Dale

Foster

Phillips

Schore

(2007). Cash and counseling: Improving the lives of Medicaid beneficiaries who need personal care or home-and community-based services. https://www.mathematica.org/our-publications-and-findings/publications/cash-and-counseling-improving-the-lives-of-medicaid-beneficiaries-who-need-personal-care-or-home-and-communitybased-services

Carter Anand

Davidson

Macdonald

Kelly

. (2012). The transition to personal budgets for people with disabilities: A review of practice in specified jurisdictions. http://nda.ie/Policy-and-research/Research/Research-publications/Personal-Budgets-/The-Transition-to-Personal-Budgets-for-People-with-Disabilities-A-Review-of-Practice-in-Specified-Jurisdictions/

Collings

Dew

Dowse

(2018). Unpacking the complexity of planning with persons with cognitive disability and complex support needs. Journal of Applied Research in Intellectual Disabilities, 31(31), 31–31. https://doi.org/10.1111/jar.12381

Cook

J. A.

Terrell

Jonikas

J. A.

(2004). Promoting self-determination for individuals with psychiatric disabilities through self-directed services—A look at federal: State and public systems as sources of cash-outs and other fiscal expansion opportunities [Electronic Version]. http://mentalhealth.samhsa.gov/publications/allpubs/NMHo5-oi92/default.asp

Critical Appraisal Skills Programme. (2018). CASP Checklists. http://www.casp-uk.net/

10.

Fleming

(2016). How personal budgets are working in Ireland-Evaluating the implementation of four individualised funding initiatives for people with a disability in Ireland. Genio Trust. www.genio.ie/personal-budgets

11.

Fleming

McGilloway

Hernon

Furlong

O’Doherty

Keogh

Stainton

(2019). Individualised funding interventions to improve health and social care outcomes for people with a disability: A mixed-methods systematic review. Campbell Systematic Reviews, 3, Article e1008. https://doi.org/10.4073/csr.2019.3

12.

Harkes

M. A.

Brown

Horsburgh

(2014). Self-directed support policy: Challenges and possible solutions. British Journal of Learning Disabilities, 42(42), 42–42. https://doi.org/10.1111/bld.12024

13.

Harry

M. L.

Mahoney

K. J.

Mahoney

E. K.

Shen

(2017). The cash and counseling model of self-directed long-term care: Effectiveness with young adults with disabilities. Disability and Health Journal, 10(10), 10–10. https://doi.org/10.1016/j.dhjo.2017.03.001

14.

HM Treasury. (2020). The Magenta book: Central Government Guidance on evaluation. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/879438/HMT_Magenta_Book.pdf

15.

Kako

Sweetland

Melda

Coombs

Smith

Agosta

(2013, February). The balancing incentive program: Implementation manual. Mission Analytics Group.

16.

Kenyon

(2018). The national disability insurance scheme: “The most vulnerable among us are being left behind..” Parity, 31(8), 23–25. https://search.informit.com.au/documentSummary;dn=000434263155525;res=IELFSC

17.

Lakhani

McDonald

Zeeman

(2018). Perspectives of self-direction: A systematic review of key areas contributing to service users’ engagement and choice-making in self-directed disability services and supports. Health & Social Care in the Community, 26(26), 26–26. https://doi.org/10.1111/hsc.12386

18.

Livanos

(2018). Planning for people with intellectual disability. Intellectual Disability Australasia, 39(3), 13–15. https://search.informit.com.au/documentSummary;dn=973565505810751;res=IELNZC

19.

Lombe

Inoue

Mahoney

Chu

Putnam

(2016). Understanding effects of flexible spending accounts on people with disabilities: The case of a consumer-directed care program. Journal of Social Work in Disability & Rehabilitation, 15(15), 15–15. https://doi.org/10.1080/1536710X.2016.1124255

20.

Mahoney

Morano

Mahoney

DeVellis

(2019). The tasks and characteristics of supportive support brokers. Journal of Gerontological Social Work, 62(62), 62–62. https://doi.org/10.1080/01634372.2018.1561585

21.

Malley

J. N.

Towers

A.-M.

Netten

A. P.

Brazier

J. E.

Forder

J. E.

Flynn

(2012). An assessment of the construct validity of the ASCOT measure of social care-related quality of life with older people. Health and Quality of Life Outcomes, 10(10), 10–10. https://doi.org/10.1186/1477-7525-10-21

22.

Martinez

Pritchard

(2019). Proceed with caution What makes personal budgets work?. https://dera.ioe.ac.uk/34205/1/Personal%20Budgets_AW_4_0.pdf

23.

National Disability Insurance Agency. (2019). Support coordination. https://www.ndis.gov.au/participants/using-your-plan/who-can-help-start-your-plan/support-coordination#what-is-support-coordination

24.

Newbronner

Chamberlain

Bosanquet

Bartlett

Sass

Glendinning

(2011). Keeping personal budgets personal: Learning from the experiences of older people, people with mental health problems and their carers. (Adults’ Services Report). Social Care Institute for Excellence. http://www.scie.org.uk/publications/ataglance/ataglance36.asp

25.

Rabiee

Glendinning

(2010). Choice: What, when and why? Exploring the importance of choice to disabled people. Disability & Society, 25(25), 25–25. https://doi.org/10.1080/09687599.2010.520896

26.

Sciegaj

Mahoney

K. J.

Schwartz

A. J.

Simon-Rusinowitz

Selkow

Loughlin

D. M.

(2016). An inventory of publicly funded participant-directed long-term services and supports programs in the United States. Journal of Disability Policy Studies, 26(26), 26–26. https://doi.org/10.1177/1044207314555810

27.

Sebelius

(2014). Guidance to HHS agencies for implementing principles of Section 2402 (a) of the affordable care act: Standards for person-centered planning and self-direction in home and community-based services programs. Washington, DC, US Department of Health and Human Services. https://www.acl.gov/sites/default/files/programs/-/-a-Guidance.pdf2017032402

28.

Sox

H. C.

Goodman

S. N.

(2012). The methods of comparative effectiveness research. Annual Review of Public Health, 33, 425–445. https://doi.org/10.1146/annurev-publhealth-031811-124610

29.

Think Local Act Personal. (2017). Personal outcomes evaluation tool for adults in receipt of social care support 2017 Report. https://www.thinklocalactpersonal.org.uk/_assets/Resources/TLAP/POETPHB2017.pdf

30.

Timberlake

M. T.

Leutz

W. N.

Warfield

M. E.

Chiri

(2014). “In the driver’s seat”: Parent perceptions of choice in a participant-directed Medicaid waiver program for young children with autism. Journal of Autism and Developmental Disorders, 44(44), 44–44. https://doi.org/10.1007/s10803-013-1942-4

31.

U.S. Centers for Medicare and Medicaid Services. (n.d.). Self-directed services Medicaid-long term services supports. https://www.medicaid.gov/medicaid/long-term-services-supports/self-directed-services/index.html

32.

U.S. Government Publishing Office. (2014). Patient Protection and Affordable Care Act. Public Law 111–148. March 23, 2010 [As Amended Through P.L. 117–2]. https://www.govinfo.gov/content/pkg/COMPS-9307/pdf/COMPS-9307.pdf

33.

Valentine

(2010). A consideration of medicalisation: Choice, engagement and other responsibilities of parents of children with autism spectrum disorder. Social Science & Medicine, 71(71), 71–71. https://doi.org/10.1016/j.socscimed.2010.06.010

34.

Veritas Health Innovation. (n.d.). Covidence Systematic Review software. https://www.covidence.org/home

35.

Wright

Bragge

(2018). Interventions to promote healthy eating choices when dining out: A systematic review of reviews. British Journal of Health Psychology, 23(23), 23–23. https://doi.org/10.1111/bjhp.12285

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.02 MB