Ensuring quality services in home care can be difficult. This quality is monitored primarily by regulation of home-care agencies through a combination of state licensing, Medicare certification, and accreditation by private nongovernmental organizations. Yet these measures are oriented more toward medical services than personal assistance services. Many paid care workers are not monitored at all by Medicare or state licensing agencies. As the use of home- and community-based services grow, states must develop ways to ensure quality (including federal oversight for federally funded services), such as adequate training and wages for direct-care workers (see this chapter’s section Creating an Adequate, Well-Trained Long-Term Services and Supports Workforce for more on wages for direct-care workers).
No quality measures can assess each and every service that is delivered daily in hundreds of thousands of private homes across America. Moreover, as older adults and people with disabilities take a more active role in the care they receive, the entire paradigm of what constitutes quality is being reevaluated. Many older adults and people with disabilities believe that the individual receiving services should be the one to determine what counts as high-quality care. A worker may be technically proficient at performing personal assistance tasks; but if the services are not delivered in a respectful and caring manner, they fail to enhance the recipient’s quality of life. Many home-care services are highly personal in nature—bathing, dressing, toileting, and grooming, for example. People who require these types of services want to retain their dignity and be treated with respect. New models of quality measurement are beginning to consider these issues.
Concerns like these have helped fuel the movement to promote participant-directed services. Many people 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 an agency’s, and can therefore schedule tasks at the times they prefer, rather than at the agency’s convenience. Home-care consumers also prefer to have the continuity of one worker who becomes familiar with their needs and preferences, rather than having to retrain a rotating array of workers sent by an agency.
Older adults and people with disabilities may face a special risk when service providers fail to show up. Yet most states lack comprehensive systems for ensuring backup services in their Medicaid programs.
Emergency preparedness plans—about 13 million people age 50 and older say they would need help being evacuated from their homes in a natural disaster; about half would require help from someone outside their household. All in all, older people are likely to be more vulnerable during disasters than the general adult population, due to lower physical capacity and less resiliency. Recent disasters have highlighted this. During Hurricane Katrina, many older adults lost their lives when they were abandoned in nursing facilities. When Superstorm Sandy struck the Northeast in 2012, older adults in a New York City nursing facility were left without food, water, lights, heat, and lines of communication to the outside world. Older adults may be unable to get to emergency food and water distribution centers. They may also have to rely on informal community networks for support, which may be disrupted when disaster strikes.
Home Care: Policy
Federal quality assurance standards
Federal regulations should promote home-care quality assurance standards that are guided by flexible consumer-oriented principles offering beneficiaries access to a broad range of services and providers, safety and freedom from exploitation, the right to participate in care decisions, and maximum self-sufficiency 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 satisfaction; system performance; and privacy concerns.
The federal government should gather data and conduct research on standards for quality care, particularly in the area of unskilled care.
Special attention must be paid to the development of outcome measures for assessing quality of care.
State quality assurance efforts
States should be required to submit detailed information on their quality assurance approaches when applying for a Medicaid HCBS waiver, including data on the program’s design, methods for discovering quality problems, and methods of remediation and improvement.
States should be required to report to Centers for Medicare & Medicaid Services (CMS) the quality assurance measures being used in all Medicaid-funded HCBS, whether through the personal care services option, HCBS waivers, or other mechanisms.
States should allocate sufficient funding to collect the data needed to plan and monitor the cost and quality of HCBS and to ensure quality services and client autonomy. Funding to monitor quality and take quick action to remediate identified problems is critical.
States should adopt a standardized bill of rights for home-care agency clients. Agencies should be required to provide clients and/or their representatives 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 in-home surveys that assess clients’ experience and involvement in care plans and outcomes, and should require that surveyors interview consumers separately from their care providers.
States should publicly and timely disclose all survey findings while safeguarding the privacy of consumers.
Federal and state governments should provide a role and adequate funding for ombudsmen in monitoring the quality of home care.
States should extend the purview of the ombudsman program to include HCBS, and ensure that ombudsmen have adequate funding to monitor such services.
Emergency management planning
More federal funding should be provided to the Administration for Community Living to develop and implement its emergency management responsibilities on behalf of older people.
The Federal Emergency Management Agency (FEMA) should have specific and detailed protocols that address the needs of older adults and vulnerable populations in disasters. FEMA should study the breakdowns in assistance that occurred in previous disasters and use these lessons to guide the development of new emergency response protocols.
States should make identifying, registering, and tracking older people who cannot evacuate on their own a high priority in local communities. Efforts must be made to protect registry data from data mining or ransom ware efforts.
States should train emergency management personnel in the needs of older people and train aging-network personnel in emergency management procedures.
Older adults and people with disabilities should be included in emergency drills and training exercises.
States should include protections for vulnerable older people in state and local emergency preparedness activities, such as planning, communications, evacuations, transportation, and housing.
Grievances and appeals
The federal government should ensure that grievance and appeals mechanisms are readily available and develop a range of enforcement options and an external review mechanism to monitor care management and services.
States should require agencies to establish grievance and appeals procedures and provide clients 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), and 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) and that agencies provide family caregivers 24-hour emergency assistance by telephone.
States should be required to demonstrate to CMS the effectiveness of methods they use to ensure that backup workers are available to all individuals who receive Medicaid-funded HCBS.
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.
Care managers and care management agencies should be conflict-free and thus 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.