Study of Promising Medicaid Optional State Plan Personal Care Services Programs

Selection Criteria and Method

This study of Medicaid Optional State Plan Personal Care Services (PCS) programs involves three main stages of activity: (1) identifying approximately 10 better practices in PCS programs (e.g., consumer direction), (2) the use of these practices as the basis for selecting approximately 5promising programs, and (3) producing case reports of the selected promising programs. This document outlines the criteria and method for selecting the promising programs from an initial analysis of better practices.

Criteria for Selecting Promising Programs

1. The program must have been operational for at least one year.

2. There must be quantitative or qualitative program data even if this information was not collected as part of an organized evaluative design. This evidence will include such information as: expenditures, participants, services offered, and quality/satisfaction measures involving the perspectives of policymakers, management, workers, consumers, and their families.

3. For programs fulfilling both the first two criteria, final selection will be based on evidence of better practices described below.

Better Practices in PCS Programs

Evidence and information on better practices in PCS programs was collected from three sources: (a) the researchers’ annual national survey of PCS programs, (b) systematic literature review (described below), and (c) consultation with the PAS Center advisory panel.

A three-stage review of literature concerning PCS program design (1990-2005) was conducted using eight online databases including: Medline, JStor, ABI Inform, and ISI Web of Science. First, abstracts were collected from searches using the following 6 search terms: (1) 24 keywords/combinations (e.g., ‘personal care’, ‘better practices’); (2) 7 leading analysts (e.g., Doty); (3) 8 private organizations (e.g., NCSL, NGA); (4) 6 government entities (e.g., ASPE, CMS); (5) 10 journals (e.g., Journal of Disability Policy Studies); and (6) 3 web-based clearinghouses for HCBS policy literature such as

Second, each abstract was reviewed and coded by: ‘form’ (journal article, report, other), ‘type’ (empirical or descriptive/review), and of primary or secondary concern to this study. For literature judged to be a primary concern, full texts were obtained. The content of the full texts was then reviewed to identify conceptions of better practices in PCS programs. Initially, this produced a ‘long’ list of 21 items that was distributed for comment to the PASCenter’s advisory panel of national experts (listed at From their feedback, the short list of practices summarized in Table 1 was produced.

Table 1: Better PCS Practices & Techniques
Dimensions/areas Examples/techniques Sources
1. Planning
a. Population Needs Assessment/system reform Telephone survey, survey, analysis of state disability & demographic data Mahoney et al (2004), Pita et al (2001); CMS 2004
b. Consumer Involvement Formal representation on state governmental committees, public consultation. Kosciulek (2000), NCD (2004)
c. Evidence-Based Policy Pilot study, review of literature, review other states’ practice NCD (2004)
3. Content & Structure
a. Access Informed choice approaches, (single) screening & assessment tools, single point of entry, community transition, information provision. Foster et al (2003), Benjamin, et al (2000), Kosciulek (2000); CMS 2004
b. Integrated Services (PC linked with) Housing, transport, assistive technology Batavia (2001); CMS 2004
c. Organization & management Integrated structure, consumer direction, case management, nurse delegation, consumer involvement (Management boards, public consultation) & consumer training Meiners et al (2002); Kosciulek (2000), NCD (2004); CMS 2004
d. Finance Reimbursement rates, cost controls, managed care CMS (2004)
e. Workforce, Employment & Caregiver Support Training, recruitment, pay/benefits, employment models, ‘caregiver support’ (respite etc?) Litvak (1998), Ungerson (1999); CMS 2004
3. Accountability & Review, Oversight
a. Internal (Quality Data gathering, analysis, dissemination) Interviews with participants, monitor complaints, satisfaction surveys, ombudsman, abuse protection and prevention Young & Sikma (2003), Beatty (1998), Litvak (1998), Kennedy (1993); CMS 2004
b. External (Regulation) Enforcement of standards Litvak (1998)

a. Better Practices in Planning PCS Programs

Needs Assessment. Program design literatures and CMS guidance identify population need assessment as a critical starting point for HCBS program design. Thus, we will look for evidence that significant activity (in terms of scope and nature) was under-taken during the design, or possibly re-design, of a program. Needs assessment is recognized to be a multi-faceted concept involving both: (a) need as expressed by advocates, consumers and their families, and (b) need as identified and assessed by policy makers and professionals.

Consumer involvement. Program design literatures and CMS guidance identifies consumer involvement in HCBS program planning as a better practice. This may take one of two basic forms: (a) more formally, consumer/advocate representation on design task forces, and/or (b) less formal involvement through for example, advisory bodies and surveys.

Evidence-Based Policy. The public policy literature suggests that programs should be designed and run on the basis of extant evidence towards the goal of evidence-based policy. Better practices around this issue may involve systematic attempts to design and re-structure programs on the basis of extant evidence and research. This may be conducted ‘in house’ or through external agencies.

b. Better Practices in the Content & Structure of PCS Programs

Access, service integration, organization and management, finance and workforce are central tenets of contemporary HCBS program policy. We adopt a broad conception of each dimension so that, for example, access covers both single points of entry and informed choice approaches to better informing consumers, potential consumers, and other stakeholders of the range of service options available. Thus, better practices would involve measures specifically directed towards this aim including one-stop information shops, consumer outreach, marketing, education etc.

To avoid overlap/duplication with the PASCenter Workforce Project’s study, we will not examine the six best practices identified for workforce initiatives: (a) recruitment & selection, (b) education & training, (c) workplace strategies to create quality jobs/care, (d) strategies to create quality jobs/care, (e) leadership, and (f) benefits. Recognizing the centrality of these issues within promising programs, it is intended that insights from the Workforce Project will be ‘fed-into’/inform the case studies.

c. Better Practices in the Review & Monitoring of PCS Programs

Internal quality assurance. The research literature notes the underdevelopment of quality assurance mechanisms within HCBS generally. Thus, initial efforts to define and measure the quality of PAS within formal programs represent better practice. We will examine evidence of initiatives that attempt to assess quality from the perspectives of consumers, their families, policymakers, regulators and providers.

External regulation and accountability. The research literature notes the underdevelopment and inter-state variation of regulation with HCBS generally. Thus, initial efforts at formalizing the oversight, regulation and accountability of providers within formal programs represent better practice.

Martin Kitchener, Micky Willmott, and Charlene Harrington

8 September, 2005