Understanding Medicaid Home and Community Services: A Primer, 2010 Edition. Endnotes: Citations, Additional Information, and Web Addresses


  1. The original chapter was co-authored by Gary Smith, Pamela Doty, and Janet O’Keeffe. The information in this chapter is drawn from several sources. The section on consumer choice and provider qualifications is from the original Primer chapter. The sections on Basic Features of Participant Direction of Medicaid HCBS and Federal Medicaid Statutory Authorities, authored by Gary Smith, are taken verbatim from Chapter 2 of the publication Developing and Implementing Self-Direction Programs and Policies: A Handbook. (See the Resources section of this chapter for the full citation, including web links to the entire document and to the individual chapters.) The section on Financial Management Services (FMS) is a brief condensation of information in Chapter 7, Fiscal/Employer Agent Services, authored by Susan Flanagan in the same publication. Suzanne Crisp and Janet O’Keeffe updated all other sections.

  2. Family involvement is not always needed or appropriate, but many participants desire or require it.

  3. Brown, R., Lepidus Carlson, B., Dale, S., Foster, L., Phillips, B., and Schore, J. (2007). Cash & Counseling: Improving the Lives of Medicaid Beneficiaries Who Need Personal Care or Home and Community-Based Services. Princeton, NJ: Mathematica Policy Research, Inc. Available at http://www.cashandcounseling.org/resources/20070910-145713/index_html .

  4. Phillips, B. et al. (2003). Lessons from the Implementation of Cash and Counseling in Arkansas, Florida and New Jersey. Washington, DC: Department of Health and Human Services, Assistant Secretary for Planning and Evaluation. Available at http://aspe.hhs.gov/daltcp/reports/cclesson.htm .

  5. In the developmental disabilities field, the term “circle of support” is used to describe such informal supports.

  6. Doty, P., Kasper, J., and Litvak, S. (1996). Consumer-Directed Models of Personal Care: Lessons from Medicaid. TheMilbank Quarterly,74(3):377-409. Available athttp://aspe.hhs.gov/daltcp/reports/lessons.htm

  7. CMS collaborated with Arkansas, Florida, and New Jersey to design programs under the §1115 Research and Demonstration waiver authority (hereafter referred to as the §1115 waiver authority) to implement the demonstration and to evaluate the benefits of this approach. The demonstration was launched in the three states between 1998 and 2000, using a random assignment social experimental design to address selection bias, which yielded robust data about the positive benefits of the Cash and Counseling approach to participant direction. Phillips, B. et al. (2003), op. cit. Several more reports about the results of the demonstrations are located at http://aspe.hhs.gov/_/topic/topic.cfm?topic=Consumer%20Choice.

  8. Notably, fewer than a dozen participants in all three states selected the cash option. Pamela Doty, Office of the Assistant Secretary for Planning and Evaluation. Personal communication, July 2008.

  9. More information about this program is available at http://www.rwjf.org/reports/npreports/sdpdd.htm .

  10. A few states offered employer authority prior to the Independence Plus initiative.

  11. CMS. (2008). Application for a §1915(c) Home and Community-Based Waiver [Version 3.5] Instructions, Technical Guide and Review Criteria. See the Resources section of this chapter for a web link to the application instructions.

  12. P.L. 109-171.

  13. The DRA-2005 also provides that states may offer participants in Money Follows the Person (MFP) demonstrations the authority to direct their services and supports. Section 6071 of DRA-2005 also authorized the Secretary of HHS to award $1.75 billion in special MFP demonstration grants over a 5-year period to states to support the transition of individuals from institutional settings to the community. These grant funds may be used to pay for special transition services to facilitate community placement. States are also eligible to receive an enhanced Federal Medical Assistance Percentage (FMAP) for a 1-year period for the costs of HCBS furnished to persons who move to the community.

    After 1 year, the state must ensure that individuals will continue to receive HCBS through the Medicaid State Plan and/or an HCBS waiver. In order to qualify for the enhanced FMAP, individuals must transition to community living arrangements that they own or lease, their family home, or a community-based residential setting where no more than four unrelated people reside. CMS has awarded MFP grants to 31 states to support the transition of individuals from nursing facilities, intermediate care facilities for persons with intellectual disabilities, and other institutional settings to the community.

    Section 6071(c) of DRA-2005 specifically provides that a state may offer MFP demonstration participants the authority to direct their HCBS. The participant direction elements of the MFP authority closely parallel the participant direction provisions contained in the §1915(i) HCBS State Plan authority. These elements include providing for a person-centered service plan development process and the option for the state to give participants choice and control over an individual budget. More information concerning MFP is located at http://www.cms.hhs.gov/DeficitReductionAct/20_MFP.asp

  14. As provided in §1902(a)(23) of the Social Security Act, participants may select any qualified and willing provider to furnish services. A significant number of states restrict freedom of choice of FMS provider because the cost of monitoring large numbers of FMS providers often outweighs the benefit of receiving a higher FMAP matching payment.

  15. The terms primary and secondary employer are often used in states’ unemployment statutes to describe the role of employers under a “co-employer” model.

  16. Individuals may establish additional qualifications as long as they do not contradict those that the state has established. For example, a person may require that the worker can communicate in sign language.

  17. CMS. (2008). Application for a §1915(c) Home and Community-Based Waiver [Version 3.5] Instructions, Technical Guide and Review Criteria, p. 195. See the Resources section of this chapter for a web link to the application instructions.

  18. Home and community services may be delivered under additional authorities and through various service delivery arrangements. For example, the delivery of Medicaid health and long-term care services may be integrated under the §1915(a) authority. HCBS also may be included in managed care programs offered under the provisions of §1932 of the Social Security Act. The Medicare Prescription Drug, Improvement, and Modernization Act of 2003 created a new type of Medicare coordinated care health plan, the Medicare Special Needs Plan (SNP). SNPs may be created to “wrap around” the delivery of health and long-term care services for persons who are dually eligible for Medicare and Medicaid. Section 6044 of the DRA-2005 gives states the option to create alternative Medicaid benefit packages, including tailored benefits to meet participants’ special health needs. As a general matter, participant direction options may be employed in conjunction with these other authorities or service delivery arrangements.

  19. Section 1115 of the Social Security Act gives the Secretary of HHS wide-ranging authority to grant states waivers of Federal Social Security Act provisions for the purpose of demonstrating and evaluating alternative approaches to service delivery. When a state is interested in testing such alternative approaches, this waiver authority provides states with a means to obtain relief from statutory requirements that stand in the way of implementing them. A state is required to develop a research strategy to assess the extent to which its alternative approach results in improved or more efficient delivery of services to participants. In recent years, states principally have employed this authority to restructure the delivery of Medicaid health care services rather than long-term care services. The authority also has been employed to expand eligibility for Medicaid services. Section1115 waivers operate under “budget neutrality” requirements (i.e., expenditures can be no higher under the waiver than they would otherwise have been).

  20. It was necessary to use this authority in the Cash and Counseling demonstrations, which offered participants a cash option, permitted participants to redirect personal care/assistance funds to purchase other goods and services, and allowed payment of legally responsible relatives for services.

  21. Source: Mary Sowers, CMS. Personal communication, December 11, 2009.

  22. Centers for Medicare & Medicaid Services. (2005). Medicaid-At-A-Glance: 2005. Available at http://www.cms.hhs.gov/MedicaidGenInfo/downloads/MedicaidAtAGlance2005.pdf .

  23. The exact number of states is not known.

  24. Must provide option to transition to traditional services under §1905(a)(24) and §1915(c) authorities.

  25. These two states furnish HCBS to Medicaid participants under the §1115 waiver authority.

  26. CMS stressed the use of person-centered planning, provided guidance to states on establishing individual budgets, defined requirements for supporting participants who direct their services (e.g., through the provision of financial management services and information and assistance services), and provided guidance on how states could permit waiver program participants to exercise choice and control over the selection of workers and their individual budgets.

  27. CMS also issued a §1115 waiver template for the same purpose.

  28. CMS worked in collaboration with several state agency associations that have operational responsibility for HCBS delivery: the National Association of State Directors of Developmental Disabilities Services, the National Association of State Units on Aging, the National Association of State Medicaid Directors, the National Association of State Head Injury Administrators, and the Alliance of Cash and Counseling States.

  29. The Version 3.3 HCBS waiver application was released in November 2005 but has since been replaced by subsequent versions. Version 3.5 was issued in January 2008. CMS continually updates the waiver application and the current version is also being updated. Version 3.6 is expected to be released in late 2010 or early 2011. With respect to participant direction, there are no substantive differences in the treatment of participant direction among the various versions of the application.

  30. CMS. (2008). Application for a §1915(c) Home and Community-Based Waiver [Version 3.5] Instructions, Technical Guide and Review Criteria. See the Resources section of this chapter for a web link to the application instructions.

  31. Appendix E built upon the participant direction elements that were contained in the predecessor Independence Plus waiver application template.

  32. Waiver of comparability has traditionally been interpreted to mean that states can have multiple waivers offering different kinds of services for different populations. However, there has also been a legal interpretation by General Counsel that there can be no waiver of comparability within waivers. Unlike the §1915(j) authority, HCBS waiver rules do not have an explicit prohibition on self-direction for group home residents. However, as a practical matter, group home residents can not direct their services if they are provided by facility staff or outside staff through arrangements with the facility. Basically, if waiver participants choose to live in a group residential service setting, by definition they are choosing to use services they can not direct. However, it is technically possible that “some” services not provided by the facility could be self-directed.

  33. It is important to specify that a representative may be the common law or managing employer because in both cases, the employer must be someone who can successfully participate in an unemployment or worker’s compensation appeal.

  34. State Medicaid Director Letter regarding how to check for excluded providers, available at http://www.cms.gov/smdl/downloads/SMD061208.pdf .

  35. In the Instructions, Technical Guide, and Review Criteria that accompanies the HCBS waiver application, p. 172, CMS has defined Individual Directed Goods and Services as “services, equipment or supplies not otherwise provided through this waiver or through the Medicaid State Plan that address an identified need in the service plan (including improving and maintaining the participant’s opportunities for full membership in the community) and meet the following requirements: the item or service would decrease the need for other Medicaid services; AND/OR promote inclusion in the community; AND/OR increase the participant’s safety in the home environment; AND, the participant does not have the funds to purchase the item or service or the item or service is not available through another source. Individual Directed Goods and Services are purchased from the participant-directed budget. Experimental or prohibited treatments are excluded. Individual Directed Goods and Services must be documented in the service plan.”

  36. A few states extend the coverage of Individual Directed Goods and Services to waiver participants who do not formally self-direct. More commonly, the coverage is confined to individuals who self-direct and exercise budget authority. For example, West Virginia includes this coverage in its Personal Options participant direction program in its Medicaid HCBS waiver for older persons and individuals with disabilities. Waiver participants may save up to $1,000 from their budget to purchase participant-directed goods and services. For more information, go to http://www.cashandcounseling.org/resources/20070611-111748 .

  37. Issued on November 19, 2009. Available at http://www.cms.hhs.gov/SMDL/downloads/SMD111909.pdf .

  38. Participant direction programs pose different risks than do traditional service delivery programs. In both programs, a risk always exists that workers will not show up. But when participants assume the role of employer and a professional service provider is no longer overseeing service delivery, participants themselves must assume the responsibility of managing staff and assessing quality. Participants who employ their workers may also be liable if employment-related taxes and workers compensation insurance premiums are not paid. Consequently, CMS requires states to (1) institute safeguards and supports to minimize participants’ potential liability (including the use of strong fiscal employer agent models), and (2) develop quality management and improvement systems sufficient to safeguard the health and welfare of individuals in participant direction programs. States must also continue to meet all other statutory assurances required when operating a waiver program.

  39. When financial management services are furnished as a Medicaid administrative activity, costs are reimbursable at the standard 50 percent administrative claiming rate for federal financial participation. Under this option, a state may limit the number of FMS entities, for example, by selecting them through a competitive process. When financial management services are furnished as a waiver service, the costs are reimbursable at the state’s services claiming rate, which may be higher than 50 percent and any willing and qualified provider must be permitted to furnish financial management services.

    When the services are covered as a waiver service, a state also may designate the FMS provider as an “organized health care delivery system.” Such a designation may simplify compliance with Medicaid provider agreement requirements. There is an extensive discussion of the provision of financial management services as an administrative activity or as a covered waiver service in the CMS HCBS Waiver Application Instructions, Technical Guide, and Review Criteria, including managing provider agreements. See the Resources section of this chapter for a web link to the Application Instructions.

  40. Another option for providing counseling services to self-directing HCBS waiver participants is the use of targeted case management services (paid as a State Plan service). See the Resources section of this chapter for additional information on counseling services and Chapter 4 for information on the targeted case management option.

  41. The §1915(b) waiver authority permits a state to obtain a freedom of choice waiver in order to limit the providers of Medicaid State Plan services. Some states (e.g., Michigan and Wisconsin), and sometimes jurisdictions within a state, operate programs under concurrent §1915(b)/§1915(c) waivers. For example, the North Carolina Piedmont Cardinal Health Plan operates under concurrent §1915(b)/§1915(c) waivers to provide mental health and developmental disabilities services in a five-county area.

    See also Chapter 9:Incorporating Self-Direction Options in Managed Care Plans from the publication Developing and Implementing Self-Direction Programs and Policies: A Handbook. See the Resources section of this chapter for the full citation and web link to the chapter.

  42. A state can restrict freedom of choice of financial management services entities and information and assistance providers in a (b)(c) waiver program and receive Federal matching funds under the service rate rather than the administrative rate, as long as the service is included in the approved §1915(b)(4) request.

  43. The text of §1915(i) is located at http://www.paelderlaw.com/pdf/DRA_Provisions.pdf .

  44. Section 1915(i)(1)(G)(iii) of the Social Security Act.

  45. See Chapter 5, Individual Budgeting from the publication Developing and Implementing Self-Direction Programs and Policies: A Handbook. See the Resources section of this chapter for the full citation and web link to the chapter.

  46. The authority defines participant direction as follows: “The participant (or in the case of a participant who is a minor child, the participant’s parent or guardian, or in the case of an incapacitated adult, another individual recognized by state law to act on behalf of the participant) exercises choice and control over the budget, planning, and purchase of participant-directed personal assistance services, including the amount, duration, scope, provider, and location of service provision.” The text of §1915(j) is located at http://www.paelderlaw.com/pdf/DRA_Provisions.pdf .

  47. Different Medicaid authorities use different terms to describe the same service. As noted previously, the terms personal assistance, personal care, and attendant services encompass the same service: assistance performing activities of daily living (ADLs) and instrumental activities of daily living (IADLs).

  48. Available at http://www.cms.hhs.gov/SMDL/downloads/SMD091307.pdf . The letter provides guidance on the implementation of Section 6087, Optional Participant Direction Personal Assistance Services Program of the Deficit Reduction Act of 2005.

  49. Available at http://www.cms.hhs.gov/SMDL/downloads/SMD091307Encl.pdf .

  50. On October 3, 2008, CMS published a final rule in the Federal Register (73 Fed. Reg. 57,854) providing guidance to states that choose to administer self-directed personal assistance services through their Medicaid State Plan, as authorized by the DRA-2005. Available at http://edocket.access.gpo.gov/2008/E8-23102.htm .

  51. A cash option would be allowed under a §1115 waiver, but CMS is no longer approving the use of this authority solely to implement participant-directed services options. However, if a participant direction program is a component of a broader Medicaid reform proposal, the authority could be used.

  52. Available at http://www.cms.hhs.gov/SMDL/downloads/SMD111909.pdf .

  53. Under the §1915(j) authority, CMS does not require states to mandate the use of financial management services for participants who elect the “cash” option. Instead, these participants may choose to retain responsibility for some or all of their fiscal and employer-related responsibilities. Individuals who receive cash benefits have the option to hire an FMS provider or a private accountant to perform employer tasks, such as payment of payroll taxes. Participants who choose to perform these tasks themselves must comply with all applicable employment and tax laws.

  54. 42 CFR Subpart G--Home and Community-Based Services: Waiver Requirements. Available at http://law.justia.com/us/cfr/title42/42- .

  55. The service plan is based on a needs assessment that determines how many hours of aide services will be authorized for payment. Some states also require specification of tasks the aide will perform, and in some of these states the number of hours authorized is determined by the time allocated for particular tasks, such as bathing, dressing, and meal preparation.

  56. Some states require the representative to be a legal entity, such as a guardian, which limits participants’ choice of representatives.

  57. If representatives serve their own interests rather than those of participants, the counselor may advise a change of representative.

  58. At §441.480.

  59. Statute available at http://www.ssa.gov/OP_Home/ssact/title19/1915.htm .

  60. Federal Register, 73(193):57885 (444.480).

  61. CMS. (2008). Application for a §1915(c) Home and Community-Based Waiver [Version 3.5], Instructions, Technical Guide and Review Criteria. p. 173. See the Resources section of this chapter for a web link to the application instructions.

  62. O’Keeffe, J. (1996). Determining the Need for Long-Term Care Services: An Analysis of Health and Functional Eligibility Criteria in Medicaid Home and Community-Based Waiver Programs. Washington, DC: AARP Public Policy Institute.

  63. Available at http://www.hhsc.state.tx.us/Contract/529060406/final/Attachment_H.pdf .

  64. They may also do so under the §1115 waiver authority.

  65. Kathy Kelly, Minnesota Department of Human Services, Disability Services Division, Supervisor of Policy Implementation in the Home & Community Living Services Group. Personal communication, January 27, 2010.

  66. This section is condensed from Chapter 7 on Fiscal/Employer Agent Services, authored by Susan Flanagan, Ph.D., M.P.H., from the publication Developing and Implementing Self-Direction Programs and Policies: A Handbook. See the Resources section of this chapter for the full citation and web link to the chapter.

  67. CMS. (2008). Application for a §1915(c) Home and Community-Based Waiver [Version 3.5], Instructions, Technical Guide and Review Criteria. Appendix C: Participant Services, Attachment: Core Services Definitions, Section D, Services in Support of Participant Direction, #2 Financial Management Services, p. 176. See the Resources section of this chapter for a web link to the application instructions.

  68. Ibid. Appendix E, Overview: Financial Management Services, p. 201.

  69. Medicaid funds may also be disbursed directly to participants in programs under the §1115 authority. However, as stated above, CMS will generally not approve a §1115 waiver solely to offer a participant direction program.

  70. The term “neutral bank” is used because the F/EA is not providing direct care services to participants so it is “neutral” about which providers they use. Prior to the use of F/EAs, some participants with developmental disabilities found it difficult to move between/among agency service providers because their Medicaid benefit was often allocated to one service organization for the fiscal year, which had a financial interest in who provided services to participants.

  71. Payroll includes, but is not limited to, the collection and processing of worker timesheets; making sure that workers are paid in accordance with Federal and state labor laws; the withholding, filing, and payment of Federal and state income tax withholding and employment taxes, and locality taxes; processing of the advanced Federal earned income credit, when applicable, and any garnishments, liens, or levies against workers pay, as required; and generating and distributing payroll checks.

  72. When participants are not able or willing to act solely as their workers’ employer, their representatives can assume this role if they are willing to do so.

  73. Flanagan, S.A., and Green, P.S. (2000). Fiscal Intermediaries: Reducing the burden of consumer-directed support. Generations,24(111):94-95. This publication describes the development of Fiscal/Employer Agents and various issues regarding their use.

  74. Participants’ choice of provider is limited because, per IRS regulations, only one entity (a Government F/EA, or its reporting agent or subagent if it chooses to use one) can file and deposit the required Federal taxes for participants and their workers under the same entity name and Federal Employer Identification Number on the required IRS Forms.

  75. However, if a state implements a Medicaid State Plan participant direction program in accordance with §1915(j) of the Social Security Act, the costs associated with Vendor F/EA services must be billed as an administrative expense for the purpose of claiming Federal matching funds.

  76. States that limit the number of Vendor F/EA providers available to participants include, but are not limited to, Alabama, Arkansas, Arizona, Connecticut, Florida, Idaho, Iowa, Illinois, Maryland, Massachusetts, Kansas (WORK Program), Missouri, Nevada, New Jersey, New Mexico, Pennsylvania, Tennessee, Virginia, Vermont, and West Virginia. States that restrict participant choice of F/EA provider, including states that implement Government F/EAs or Medicaid State Plan amendments in accordance with §1915(i) and §1915(j) of the Social Security Act, are reimbursed for F/EA costs at the Federal administrative matching rate.

    Alabama has implemented a pilot participant direction program under its Medicaid State Plan by using the §1915(j) authority. New Jersey converted its Personal Preference Program from operating under a Medicaid §1115 waiver to the §1915(j) authority effective July 1, 2008. The Missouri Division of Developmental Disabilities has implemented a Government F/EA and performs all tasks internally. Nevada plans to implement a participant-directed services pilot for individuals with developmental disabilities living in rural areas sometime in 2010. West Virginia’s Bureau of Medical Services and Florida’s Department of Elder Affairs and Agency for Persons with Disabilities have implemented a Government F/EA and use a subagent.

  77. States include, but are not limited to, Pennsylvania (53 percent Medicaid service match rate), Michigan (58.10 percent Medicaid service match rate), Minnesota (50 percent Medicaid service match rate), and Rhode Island (52.35 percent service match rate).

  78. CMS. (2008). Application for a §1915(c) Home and Community-Based Waiver [Version 3.5], Instructions, Technical Guide and Review Criteria. Appendix E, Item E-1-i: Provision of Financial Management Services, p.205. See the Resources section of this chapter for a web link to the application instructions.

  79. Ibid.

  80. Chapter He-P600, Part He-P601, Certification of Other Qualified Agencies.

  81. The administrative burden for states of having multiple FMS providers is significant and the cost often exceeds the funds a state receives through the receipt of FMAP. In addition, the potential liability associated with poor performance by FMS providers increases when they do not have enough business to stay current with Federal and state requirements. For example, if a state has 75 FMS providers, but only 25 are regularly serving clients and 50 are not serving anyone, those without clients are at risk of not staying up-to-date with Federal and state requirements. A similar situation can occur with having too many counselors (i.e., information and assistance providers). New Jersey’s Personal Preference Program found that only a small number of counseling agencies were serving the majority of consumers while the others were serving very few consumers and were not keeping up with requirements.

  82. Medicaid Manual Transmittal Part 4, N. 73, September 17, 1999. Available online as part of the State Medicaid Manual, Chapter 4: Services, 4444 to 4658, at http://www.cms.hhs.gov/Manuals/PBM/itemdetail.asp?filter Type=none&filterByDID=-99&sortByDID=1&sortOrder=ascending&itemID=CMS021927&intNumPerPage=10 .

  83. Available at http://www.cms.hhs.gov/smdl/downloads/smd072500b.pdf .

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