Background
Ensuring the quality of services for home care is difficult. No quality measures can assess every service delivered daily in hundreds of thousands of private homes across the country. Quality is monitored indirectly by regulating home-care agencies. This is done through a combination of state licensing, Medicare certification, and accreditation by private, nongovernmental organizations. But regulations are oriented more toward medical services than long-term services and supports. Ombudsman programs do not cover home care. Licensed nursing personnel do not generally supervise direct-care workers unless they provide a nursing task that has been delegated to them.
As the use of home- and community-based services (HCBS) grows, states are challenged with developing methods to ensure quality. For example, they can identify and implement reporting systems that appropriately detect, report, and remedy critical incidents rigorously and comprehensively. Additionally, mandating adequate training and wages for direct-care workers can improve quality and continuity of care (see also Adequate and Well-Trained Workforce for Long-Term Services and Supports in this chapter for more details).
The Centers for Medicare & Medicaid (CMS) has produced a voluntary HCBS quality measure set to promote consistent quality measurement within and across state Medicaid HCBS programs. CMS expects to update the measure set in the future, including adding newly developed measures that address gaps in the current measure set.
In-home visits by HCBS case managers are an important way to gather information from consumers and caregivers. In addition, states can employ a third-party surveyor to conduct a consumer-experience survey as part of their overall quality measurement program. Choosing an appropriate survey instrument is essential. It should focus on consumer experience not consumer satisfaction, which is more subjective. In addition, it should be validated for use in all populations being served by HCBS programs and standardized and comparable across programs and states.
As older adults and people with disabilities assume a more active role in the care they receive, the entire paradigm of what constitutes quality is being reevaluated. Many home-care services are highly personal in nature: bathing, dressing, toileting, and grooming, for example. Individuals who require these types of services want to retain their dignity and be treated with respect. New models of quality measurement are beginning to recognize the need to assess this aspect of service delivery.
Many older adults and younger adults with disabilities believe that they should determine what constitutes high-quality care. For example, while technical proficiency is important, services also need to be delivered in a respectful and caring manner.
Individuals’ desire to have control over important aspects of service provision has fueled the expansion of participant-directed services. Many individuals believe they are more likely to be satisfied with the quality of the care they receive if they hire their own workers rather than using agency-assigned workers. Among the benefits is the ability to schedule assistance at the times they prefer, rather than at the agency’s convenience. Home-care consumers also prefer to have a single worker who will become familiar with their needs and preferences rather than having to retrain a rotating array of agency workers.
When applying for an HCBS waiver, a state must specify how potential risks to participants will be assessed during the development of the service plan. They must also outline how strategies to mitigate risk will be incorporated into the service plan, subject to participants’ needs and preferences. In addition, states must describe how the service plan development process will address the need for backup plans. The arrangements that are used for backup must be included. These requirements apply to both traditional and participant direction programs.
QUALITY AND CONSUMER PROTECTIONS IN HOME-CARE SERVICES: Policy
QUALITY AND CONSUMER PROTECTIONS IN HOME-CARE SERVICES: Policy
Strong quality assurance standards
Federal regulations should promote home-care quality assurance standards guided by flexible consumer-oriented principles. The principles should address the availability of comprehensive services, choice of providers, safety and freedom from exploitation, the right to participate in service planning, and maximum autonomy and independence.
Federal regulations must stipulate the necessary components of a quality assurance program for home- and community-based services (HCBS), including participant access; participant-centered service planning and delivery; provider capacity and capabilities; participant safeguards, rights, responsibilities, outcomes, and experience; system performance; and privacy concerns.
Assessment of the client’s experience should include consumer feedback on the quality and delivery of services. This includes whether the services accommodate when and how the client wants them delivered.
The federal government should gather data and conduct research on standards for quality care, particularly in the area of nonskilled in-home care.
Special attention must be paid to the development of outcome measures for assessing quality of care.
States should be required to report to the Centers for Medicare & Medicaid (CMS) the quality assurance measures used in all Medicaid-funded home- and community-based services (HCBS), whether through the personal care services option, HCBS waivers, or other mechanisms.
The federal government should precisely define “critical incidents” and require states to report the number and types of critical incidents to CMS.
States should allocate sufficient funding to collect the data needed to plan and monitor the cost and quality of HCBS and ensure quality services and consumer autonomy. Funding should be sufficient to monitor quality and take quick action to remediate identified problems.
A range of enforcement options and an external review mechanism to monitor care-management and home-care services should be developed.
States should adopt a standardized bill of rights for home-care agency clients. The bill of rights should address consumer safety, access to information, choice, dignity, and the ability to redress grievances. Agencies should be required to provide clients, their representatives, or both with a copy of the bill of rights and ensure that they understand it.
Consumer experience surveys
States should be required to conduct annual scheduled surveys assessing clients’ experience and involvement in care plans and outcomes. This meeting could take place in the home or virtually, based on the preference of the consumer. They should also require that surveyors interview consumers separately from their care providers. Surveyors should also interview family caregivers about their experience, including their own needs and well-being. States should publicly and timely disclose all survey findings while safeguarding the privacy of consumers. States should select survey instruments that facilitate comparison across care settings and allow benchmarking to other states or the national average. To the extent practicable, states should incorporate the CMS Home- and Community-Based Services Quality Measure Set into their quality measurement efforts.
States should publicly disclose all survey findings in a timely manner while safeguarding the privacy of consumers.
Ombudsman programs
States should extend the purview of their existing ombudsman programs to include long-term services and supports delivered in homes.
Federal and state governments should provide adequate funding for ombudsmen to monitor the quality of home care.
Timely grievance and appeal process
States should require agencies to establish grievance and appeals procedures and provide consumers with written notice of their right to voice grievances.
States should coordinate and investigate complaints about their response to findings of deficiencies and their disposition (including any sanctions imposed). The responsible agency should send a report to the complainant that specifies the corrective action taken.
Medical training for family caregivers
States should require that home-care providers adequately train family caregivers who agree to use technology (such as home dialysis, tube feeding, and continuous intravenous infusion). Agencies should provide family caregivers with 24-hour emergency assistance by telephone.
Backup personnel
States must demonstrate to CMS that their methods to ensure backup workers are available to all individuals who receive Medicaid-funded home- and community-based services are effective.
States should specify uniform standards for backup workers who provide personal care services, including required response coverage times and the availability of backup services 24 hours a day, seven days a week.
States should monitor the delivery of authorized services in real time and maintain specialized backup agencies and pools of backup workers to fill in on short notice.
Service limits
Care managers and care-management agencies should be conflict-free. Thus, they should be prohibited from providing other home-care services, except in areas where the number of providers is inadequate to ensure delivery of services to eligible consumers.