According to the NQF website:
NQF will collaborate with a multi-stakeholder committee to:
- Create a conceptual framework for measurement, including a definition for HCBS;
- Perform a synthesis of evidence and environmental scan for measures and measure concepts;
- Identify gaps in HCBS measures based on the framework; and,
- Make recommendations for HCBS measure development efforts.
These are the comments I made on behalf of my two adult sons who have profound developmental disabilities and my family.
To begin with, it does not appear that anyone on the HCBS Committee Roster is a recipient or relative or guardian of a person who receives HCBS. If this is the case, there should be an addition of more people who could give the committee insights into how these services are delivered and their quality from the perspective of people who receive them.
From the Executive Summary: “Consumer preferences and the policy environment also continue to favor community living over more restrictive environments.”
Preferences vary depending on the needs of the person with a disability and the ability of the family and community to provide for those needs in the least restrictive environment. Environments that may be restrictive for one person may be liberating for another. The determination of least restrictive environment is meaningless without taking into consideration the needs of the individual. Arbitrary standards regarding size and location of a setting do not serve to assure the broadest range of options necessary to serve individuals with DD.
The “policy environment” has limited the options available. Many, if not most, states restrict admissions for people with DD to Intermediate Care Facilities for IID and Skilled Nursing Homes. These settings that provide an institutional level of care could be serving a greater number of people who do very poorly in community settings, but that option has been closed off. The new CMS rule on HCBS, when it is fully implemented in 2019, could severely limit options in the community that are currently available to many people with the most severe disabilities. This is not a matter of personal preferences being in favor of these limitations, but instead comes from an ideological perspective that favors the federal government imposing these beliefs on everyone regardless of their needs or preferences.
In addition, the unavailability and poor quality of community services is a factor in families deciding that the only way to adequately serve their loved one with DD in a safe environment is to keep them at home. This is not necessarily a “preference”, but an unfortunate reality.
Definition of Home and Community-Based Services:
The term “home and community-based services” (HCBS) refers to an array of long-term supports that promote the independence, well-being, and choices of an individual of any age who has physical, cognitive, and/or behavioral health needs and that are delivered in the home or other integrated community setting.
Of the definitions considered as a basis for HCBS in this report, the one that was decided on by the committee is the least accommodating of the full range of disabilities that must be served. It does not recognize, for instance, that promoting independence is for some people with cognitive or other complex disabilities a fruitless endeavor and that achieving only a small measure of independence or never achieving that goal does not diminish the need for specialized services and care, nor should it diminish the perceived worth of the individual.
For contrast, this is the definition from the AARP Public Policy Institute:
“Home and community-based services (HCBS) refer to assistance with daily activities that generally helps older adults and people with disabilities remain in their homes. Many people with LTSS needs require individualized services or supports to live in a variety of settings: their own homes or apartments, assisted living facilities, adult foster homes, congregate care facilities, or other supportive housing.”
This definition at least acknowledges that a variety of settings may be needed by people with a range of disabilities and that these settings, whether or not they are considered “congregate”, are “home” to the people who live in them.
This would have been a better choice to serve the full range of people with disabilities.
“Over-medicalizing HCBS” and “the dignity of risk”
The concern about “over-medicalizing” HCBS would not be a concern if there was a genuine belief that the system of HCBS would be person-centered. One person’s need for extensive medical care and supervision might be directly connected to their survival and enjoyment of life. Another person who does not need or desire that care, should not be forced to accept overly regimented medical care as a condition of receiving services that enhance their enjoyment of life. The degree of medical care and supervision needed is a highly individualized determination and should not affect how others who do not need or desire medical intervention are served.
For people who are at high risk for abuse, neglect, and physical injury, including those with severe and complex cognitive and behavioral disabilities, there is no “dignity” in ignoring those risks or requiring the person to experience risks that can be reasonably anticipated in order to prove that the risks are real and must be ameliorated. Again, these determinations depend on individual needs. One person’s needs should not prevent another person from being served appropriately in an HCBS system.
Domains of HCBS Quality Measurement
If the list of Domains of Quality Measurement are in order of priority, this list does not take into account individual priorities in HCBS. For my sons, the most important domains are Human and Legal Rights that assure appropriate care and freedom from abuse and neglect, Health and Well-being, Service Delivery, Effectiveness/Quality of Services, and System Performance. The priorities should be set for individuals and not as a standard to measure whether quality HCBS are being provided.
Suggestions for consideration of HCBS Quality Measurement
The HCBS Committee should broaden its understanding of the range of disabilities that are served in the HCBS system and acknowledge differences in need that directly affect the quality of services and ultimately the quality of life for the individuals served.
One major concern in the collection and analysis of data on HCBS services, is that state and local agencies typically evaluate their own programs based largely on self-reporting by a network of providers. Where is the incentive to report the “bad news” about abuse, neglect, medical errors, and generally poor quality care? There needs to be an independent agency, different from the one charged with administering or providing supports. This independent agency would have incentives to adapt to changing conditions, game playing with the rules by providers, and other sources of erosion of protections. Such an agency would also act to bolster credible reasons for needing protections and health services so that the administrative agencies would not sound so self-serving when asking for adequate resources from legislators.