E. Long Term Care

• Library: A Practical Guide to Elder and Special Needs Law in South Carolina (SCBar) (2021 Ed.)

E. LONG TERM CARE

Unfortunately, clients often do not give much thought to long term care until the hospital discharge planner advises the family that a loved one is ready for discharge. This is a terrible time to begin the process of Medicaid planning.²⁵ Because South Carolina's health care system has been more focused on facility-based care, clients are frequently unaware of Medicaid programs that allow the individual to receive services in a less restrictive setting. Long term care is funded by Medicaid in South Carolina in the following settings:

• Homes;
• Community Residential Care Facilities (see Part Four - Chapter 4);
• DDSN licensed placements (see Part Four - Chapter 5);
• ICF/IIDs (see Part Four - Chapter 5);
• Nursing Facilities (see Part Four - Chapter 2);
• Psychiatric Inpatient Facilities for individuals over 65 (see Part Four - Chapter 5);
• Psychiatric Residential Treatment Facilities (PRTF) for individuals under 21 (see Part Four - Chapter 5) (Medicaid will not fund residential psychiatric treatment for individuals between ages 21 and 65).

As can be seen from the list of services provided through Medicaid outlined earlier in this Chapter, Medicaid does not provide many services which are necessary to maintain the health of an individual with severe disabilities who lives at home. For example, private duty nursing is not a part of the state plan, nor is personal care assistance. The methods for funding and getting the needed services for long term care in an integrated or community setting are explained below. Medicaid coverage of the institutional settings, including hospitals, nursing facilities, and other institutional alternatives are discussed in Part Four.

1. Home and Community-Based Waiver Programs

Most people, given a choice, would choose to receive care in their own home, rather than in a nursing home or other institutional setting. South Carolina participates in a number of Home and Community-Based Waivers (HCBW)²⁶ which are designed to allow the participant to avoid institutional placement. Qualified Medicaid participants must be given the choice of receiving long term care services in either an institutional setting, such as a nursing facility or a hospital, or to receive services through a home and community-based Medicaid waiver program in a community setting. Doe v. Kidd I, 501 F.3d 348, 358 (4th Cir. 2007). Resource and income limits for HCBW programs are the same as applied to determine eligibility for Medicaid funded nursing home care.²⁷

In order to receive federal funding for home and community-based services, the state must demonstrate that the cost of care for the population served by each waiver program is less than it would cost to serve that same population in the applicable institutional setting. 42 C.F.R. § 441.302(e). Thus, for a waiver program with a cap of 1,000 persons and an average cost of $30,000 per participant, an individual whose cost of care exceeds $30,000 may enter the program, so long as the average cost for the entire population dos not exceed $30,000. The Medicaid Act, however, allows the states to impose an individual cost limit.²⁸

Some requirements under the federal Medicaid provisions are "waived" to give states flexibility to define programs to meet the needs of individuals in the community. For example, the federal government may waive the requirement that a Medicaid benefit be available "statewide." Also, CMS may waive the comparability requirement. However, most provisions of the Act and the implementing regulations still apply to waiver services, such as the right to a fair hearing and that the service be sufficient in amount, duration, and scope to meet its purpose. Also, as a condition of receiving federal funding for waiver programs, states must assure CMS that the programs will comply with all applicable federal statutes, regulations, and policies, including providing evidence to the federal government that its waiver plans include "necessary safeguards . . . to protect the health and welfare of individuals" receiving home care. 42 U.S.C. § 1396n(c)(2)(A); see Wood v. Tompkins, 33 F.3d 600, 602 (6th Cir. 1994).

Most waiver programs require that the individual must meet institutional level of care to qualify for services to be provided, namely a nursing home, an ICF/IID, or a hospital level of care. The level of care requirements for each program are set forth in the applications that DHHS submits to CMS for approval.²⁹

Medicaid waiver programs provide services over and above the services provided through the State Medicaid Plan ("regular Medicaid"). Waiver participants retain eligibility for State Plan services. The Community Long Term Care Division of DHHS currently operates the following home and community-based waiver programs: Community Choices, HIV/AIDS, Mechanical Ventilator Dependent, and Medically Complex Children. As of early 2020, DHHS has applied to establish a new children's waiver program, called the Palmetto Coordinated System of Care for Children (PCSC), to replace the Psychiatric Residential Treatment Facilities (PRTF) program.³⁰

DHHS contracts with the South Carolina Department of Disabilities and Special Needs to operate three other Medicaid waiver programs: the Intellectual Disabilities/Related Disabilities (ID/RD) waiver, the Head and Spinal Cord Injury (HASCI) waiver, and the Community Supports waiver. In 2017, DHHS terminated the waiver program formerly operated by DDSN to serve children with autism, called the Pervasive Developmental Disorder (PDD) waiver. Those children are now entitled to receive services previously provided through the PDD waiver through the Autism Spectrum Disorder (ASD) Services program, which is operated by DHHS through the State Plan.

a. CMS Final Rule

Every HCBW program must comply with CMS' "Final Rule" issued on January 16, 2014, titled "Medicaid Program; State Plan Home and Community-Based Services, 5-Year Period for Waivers, Provider Payment Reassignment, and Home and Community-Based Setting Requirements for Community First Choice and Home and Community-Based Services (HCBS) Waivers." This "Final Rule" announced important changes to the regulations implementing all Medicaid home and community-based waiver programs.

The Final Rule requires that all HCBS must be provided pursuant to a "person-centered" plan of care.³¹ See 42 C.F.R. § 441.301. Clients frequently do not understand the importance of these meetings where the plan of care is established. Quite simply, if a waiver service is not contained in the plan of care, Medicaid will not pay for it. If the participant has a need that is not being met, the need should be brought to the attention at the annual plan meeting, or at a special called meeting. Federal regulations require the participant to "lead the person-centered planning process where possible," except where state law "confers decision making authority" on a representative, as the Adult Health Care Consent Act does in South Carolina. 42 C.F.R.§ 441.301(c).³²

The planning process for waiver services must:

• include persons chosen by the participant/representative;³³
• provide information and support to assure that the participant/representative "directs the process to the maximum extent possible . . .;"
• occur at times and locations convenient to the participant/representative;
• reflect cultural considerations of the participant;
• include strategies for resolving conflict or disagreement "including clear conflict-of-interest guidelines for all planning participants/representatives;"
• prohibit persons "who have an interest in or are employed by a provider" not provide case management or develop the plan, except where the provider is the only willing and qualified entity in the geographic region;
• offer informed choices regarding the services and supports and the provider of those services and support;
• record the alternative settings considered by the participant/representative.

42 C.F.R.§ 441.301(c).

The person-centered service plan must "reflect the services and supports that are important for the individual through an assessment of functional need." 42 C.F.R. § 441.301(c)(2). The plan itself must:

• ensure that services are provided in a setting chosen by the participant that is integrated in, and supports full access to the greater community;³⁴
• include opportunities to seek employment and work in competitive integrated settings;
• allow the participant to engage in community life and control his or her resources;
• allow the Medicaid participant to receive services in the community to the same degree as individuals not receiving Medicaid services;
• reflect the individual's strengths and preferences;
• reflect clinical and support needs identified through an assessment of functional need;
• include individually identified goals and desired outcomes;
• identify paid and unpaid, or "natural supports," provided that natural supports must be provided "voluntarily" in lieu of waiver services;
• reflect risk factors and methods to minimize them, including backup plans;
• be written in plain language the participant/representative understands.

42 C.F.R. § 441.301(c)(2). Importantly, the person-centered plan of care must be finalized and agreed to, with the informed consent of the individual/representative in writing and signed by all individuals and providers responsible for its implementation. Id. at (c)(2)(ix).

b. Self-Directed Alternatives

Some waiver programs provide the alternative of allowing participants to "self-direct" attendant and respite services. Through this option, the participant or family locate and hire caregivers, who are paid by a fiscal agent identified by either DHHS or DDSN. HCBW applications provide that the fiscal agent is responsible for withholding employment taxes. However, DDSN has historically required the participant or family member and the caregiver to sign forms...