List of Commenters, by Organization
- Di Shen, Ph.D., CARF International.
- Pamela Parker, M.A., Minnesota Department of Human Services.
- Katie Maslow, M.S.W., Alzheimer's Association.
- Charles Moseley, Ed.D., National Association of State Directors of Developmental Disabilities Services) (NASDDDS).
- Jeffery Thompson, M.D., Washington Department of Social and Health Services.
- Jim Gardner, Ph.D., Council on Quality and Leadership.
Di Shen, Ph.D.
Chief Research Officer
Thank you for the opportunity to submit uSPEQ® Consumer Experience Survey to the national HCBS (home- and community-based services) Measure Scan project for your consideration. uSPEQ® grew out of a decade of CARF's extensive work on performance indicators. In developing uSPEQ®, CARF was guided by feedback from providers, service payers, public agency representatives, researchers, and most importantly, persons served by health and human service providers. Key to uSPEQ® is its "crosscutting" feature because the concerns reflected in the questionnaire items cross lines of population and organization settings, including home and community-based services. Subscribers can utilize uSPEQ® within any service setting and with any population. Furthermore, uSPEQ® is specifically designed to address the needs of individual consumers regardless of age group, gender, educational background, race, ethnicity, and socioeconomic status in order to accurately reflect the diverse populations served by providers. It is the voice of the consumer. The focus in on the person who received the services and it answers the question: What happens to people like me in your program?
uSPEQ® is a confidential and anonymous questionnaire to be completed by consumers. The questionnaire and data set include items that capture characteristics of the respondents and information about their program participation and how they completed the questionnaire. With a number of available options within the management reporting capability, uSPEQ® provides concrete information for organizations to identify and reinforce their strengths and take immediate action in areas that have been highlighted for improvement.
uSPEQ® was under its second round of refinement during the AHRQ's call for HCBS measures and, therefore, we missed the deadline for submitting measures. However, I appreciate your encouragement for us to submit it past the announced deadline. With its crosscutting and consumer-based features, I firmly believe the uSPEQ® Consumer Experience Survey will contribute to the AHRQ's development of a survey instrument that measures the quality of Medicaid home- and community-based service programs. By submitting uSPEQ® to AHRQ, CARF agrees to relinquish ownership of any survey items on the uSPEQ® Consumer Experience Survey that are selected to be part of the new measure set(s) developed by AHRQ for public use.
Enclosed please find the following documents:
- uSPEQ® Consumer Experience Survey instrument.
- Technical Report: uSPEQ Consumer Experience Survey Psychometric Evaluation (also published on the uSPEQ® Web site at http://www.uSPEQ.org).
- uSPEQ® Sample Report.
- uSPEQ® Sample Questionnaire.
If you need any other information regarding uSPEQ® Consumer Experience Survey, please feel free to contact me via phone (888.877.3788 x 257) or E-mail (firstname.lastname@example.org).
Pamela J. Parker
Manager, Special Needs Purchasing,
Minnesota Department of Human Services
- How will CMS apply these measures to States? To what services and providers will they apply? Will States be held accountable for them through some formal review or are they simply measures that will be collected and tracked? It is difficult to evaluate the appropriateness of the measures outside of the context of their utilization and application.
- States are already dealing with multiple oversight requirements and processes for home and community based services including CMS waiver reviews and protocols, the Quality Framework, required QA plans, provision of new information in new waiver application formats, additional provision of data, managed care oversight requirements, new SNP performance requirements affecting integrated managed LTC programs, etc. How will these new measures fit in with existing requirements and will there be relief from other requirements under 1915 ( c), 1915(j), 1915(i) etc? Layering new measures in on top of current requirements is likely to be too burdensome for States. States have limited resources for these activities and will need to know how to prioritize which are the most critical and useful requirements.
- There is great variation among states in terms of the amount and types of services provided under their Medicaid and home and community based benefit sets. (For example, not all States have State Plan Personal Care programs.) Many States also have waiting lists for waiver services and/or State plan and waiver parameters that limit certain services. Since States are not required to provide all services needed or requested by individuals, there will be a need to separate issues related to the adequacy of the care plan and receipt of all services included from issues around state limits on services. How will this be accomplished? How will this variation in services be accommodated in the application of the measures?
- If the measures are going to be applied in a meaningful way, the scope of the measures considered should be within the sphere of influence of the State and providers of community services. For example, States should not be held responsible for medical outcomes stemming from poor medical care for which Medicare or other insurers have primary responsibility. Measures relating to avoidable hospitalizations, receipt of preventative measures, and medication and pain management relate to care provided by medical professionals paid under Medicare for dual eligibles, over which States have no direct management oversight. How is this issue going to be addressed in relation to the recommended measures list? States also have no direct way to influence client measures such as relationships with families and friends. While the collection of such measures may be useful, any application to States must be limited to only those measures within the scope of the State's direct responsibilities.
- Current case management and care coordination responsibilities are not clearly defined and/or even required for all community services or waiver recipients (for example, they are not required for people using only State Plan personal care). Nor are they consistent between States. They are also in a state of flux due to the new TCM regulations and the confusion surrounding those new requirements. Given these issues, how can case management be clearly measured? Any proposal for measures related to expectations of case managers or access to case management and care coordination (as included in the 21 important constructs listed in the draft report) must be vetted against these multiple constraints.
- We know the TEP has struggled with the fact that there are variations between States in terms of the relevant data currently collected, and also variations between types of home and community based services such as State plan versus waiver services in data collection methods and scope. In addition, there are differences in data collection and availability driven by various delivery systems, such as managed care versus fee for service. All of these data issues have to be carefully considered as CMS evaluates the application of any measures.
- As the TEP reaches the end of its role for this phase of the project, we think it is important that CMS keep States informed and actively engaged in discussions around the next steps for development of these measures. We think the Chronic Care TAG is the logical venue for continuing dialogue around this issue and would like to see it included on future TAG agendas.
The Alzheimer's Association is pleased to submit items for measuring the quality of Medicaid home and community-based services (HCBS). People with Alzheimer's disease and other dementias constitute a large proportion of all older recipients of Medicaid HCBS. Studies conducted in Connecticut, Florida, and Michigan show, for example, that 37%-38% of elderly recipients of Medicaid HCBS waiver services had a level of cognitive impairment consistent with dementia. Yet dementia is frequently not formally recognized, and the implications of dementia for a person's service needs often are not addressed in HCBS programs.
The attached list identifies aspects of HCBS program and provider performance that are particularly important for people with dementia, related goals, and suggested quality measures. The Alzheimer's Association is not aware of validated measures for many of these aspects of HCBS performance. We have included measures that were developed for other types of care but could be adapted for HCBS. For aspects of HCBS performance where there are no validated measures, we urge AHRQ to support development and validation of measures.
The first priority of the Alzheimer's Association in measurement of quality for Medicaid HCBS is recognition of dementia. Related aspects are HCBS program and provider awareness and accommodation of limitations in decision-making capacity, identification of surrogate decisionmakers, advance planning, and adaptation of HCBS for people with dementia who live alone.
People with dementia need and use a wide array of HCBS. Since most diseases and conditions that cause dementia are progressive, the cognitive, functional, and decision-making abilities of people with dementia worsen over time, and their service needs change. Thus, periodic reassessment of HCBS needs is essential.
Some performance measures that are included in widely used measure sets are not appropriate for persons with dementia. Examples are measures of improvement in cognition and activities of daily living. Since people with progressive dementia are unlikely to improve or even to remain stable in these areas, use of such measures to evaluate quality in HCBS programs could discourage providers from serving these people. If the measures are included, they should be risk-adjusted to avoid negative effects for persons with dementia.
Thank you for considering these comments.
1. Recognition of dementia
Goal: dementia is recognized, and HCBS program staff and service providers who interact with persons with dementia are aware of the dementia.
- From National Health Policy Group: proportion of persons screened to identify impairments in physical and cognitive functioning annually.
- Ideal measure that should be developed and validated: proportion of persons with dementia who are correctly identified by HCBS programs and service providers.
2. Assessment and accommodation of limitations in decisionmaking capacity
Goal: limitations in the ability of persons with dementia to make decisions about their care are assessed, accommodated in their care plans, and reevaluated regularly.
- Ideal measure that should be developed and validated: proportion of persons whose cognitive ability to make care decisions has been evaluated.
- Ideal measure that should be developed and validated: HCBS programs and service providers have procedures in place to accommodate limitations in service recipients' ability to make care decisions.
3. Identification of surrogate decisionmakers
Goal: persons with dementia who are not able to make decisions about their care have a family or other surrogate decisionmaker, and contact information for the surrogate decision-maker is readily available to the HCBS program and providers who interact with these service recipients.
- From ACOVE (focuses on end-of-life): all persons age 75 and older should have in their outpatient charts 1) an advance directive indicating the patient's surrogate decisionmaker/life-sustaining treatment preferences, or 2) documentation of a discussion about who would be a surrogate decisionmaker or a search for a surrogate/preferences, or 3) indication that there is no identified surrogate/preference.
- Ideal measure that should be developed and validated: surrogate decisionmakers are identified for HCBS recipients who are not able to make decisions about their care, and contact information for the surrogate decisionmakers is readily available to HCBS program staff and service providers.
4. Advance Planning
Goal: persons with dementia who are still able to create advance directives do so, and HCBS program staff and service providers are aware of existing advance directives.
- From ACOVE: all persons age 75 and older should have in their outpatient charts 1) an advance directive indicating the patient's surrogate decision maker/life sustaining treatment preferences, or 2) documentation of a discussion about who would be a surrogate decisionmaker or a search for a surrogate/preferences, or 3) indication that there is no identified surrogate/preference.
- From 2007 Physician Quality Reporting Initiative: Percentage of patients age 65 years and older with documentation of a surrogate decisionmaker or advance care plan in the medical record.
- From National Health Policy Group: Proportion of people who have signed advance directives.
5. Adaptation of HCBS for persons with dementia who live alone
Goal: HCBS programs and service providers are aware of persons with dementia who live alone and adapt their care plans and HCBS to meet their needs and assure their safety.
- Ideal measure that should be developed and evaluated: persons with dementia who live alone are consistently and correctly identified by HCBS programs and service providers.
- Ideal measure that should be developed and evaluated: care plans for HCBS recipients with dementia who live alone are adapted to meet their needs and assure their safety.
6. Receipt of HCBS that meet the diverse needs of persons with dementia
Goal: Medicaid HCBS programs provide access to a wide array of services and an assessment and care plan for each eligible person; eligible persons receive the services indicated in their care plan; and HCBS providers have the requisite knowledge and skills to assist with and manage the care needs and symptoms of people with dementia, including common behavioral symptoms.
- From Health Services Research Institute (HSRI): proportion of (persons) families who report they are informed about the array of existing and potential resources in a way that is easy to understand.
- From HSRI: proportion of (persons) families who report that services and supports are available when needed, even in a crisis.
- From HCQI/interRAI: number of HCBS recipients who have ADL/rehabilitation potential but are not receiving occupational therapy, physical therapy, or exercise therapy.
- From multiple sources: HCBS specified in a person's care plan are received.
- Ideal measure that should be developed and validated: HCBS programs provide the array of HCBS services needed by persons with dementia.
- Ideal measure that should be developed and validated: HCBS providers who serve persons with dementia have the requisite knowledge and skills to provide the services.
7. Care Coordination
Goal: persons with dementia and their families and other informal caregivers who need help to identify service needs, locate and arrange services, and coordinate services from different providers receive case management and other assistance that meets those needs.
- From CAHPS® PWMI: degree to which consumers found it easy to get someone from Medicaid to help coordinate their care among different providers or services.
- From the National Health Policy Group: proportion of members who can identify the person responsible for care coordination across settings.
- From HSRI: proportion of people reporting that service coordinators help them get what they need.
- From the National Health Policy Group: degree to which care plans are shared with all care providers as well as the member.
- From the SNP Alliance service providers communicate with the person's doctor and other medical care professionals to coordinate medical and community care.
- From NCQA: degree to which the organization monitors the continuity and coordination of care that members receive and takes action, as necessary, to ensure and improve continuity and coordination of care.
8. Medication management
Goal: persons with dementia take the medications prescribed by their doctor(s), and adverse medication-related events are avoided.
- From the National Health Policy Group: degree to which the health plan has a process to address annual assessment of medication use and misuse, noncompliance with medications, monitoring adverse drug events, and polypharmacy.
- From OASIS/OBQI: emergent care for improper medication administration, medication side effects.
- Ideal measure that should be developed and evaluated: HCBS programs and service providers have routine procedures for evaluating a person's cognitive capacity to manage his/her medications; if the person is not capable, the HCBS program or provider identifies and implements services to ensure that medications are managed safely, e.g., by providing information about the purpose of the drug, how to take it, expected side effects, and important adverse reactions to a family member or other informal caregiver.
9. Home Safety and Driving
Goal: HCBS program staff and service providers are aware of safety concerns, including wandering, guns in the home, and driving, and they advise and assist persons with dementia and their family and other informal caregivers to reduce safety risks.
- From the National Health Policy Group: number of home safety evaluations conducted.
- From ACOVE: If an older person has newly diagnosed dementia, then one of the following should occur (consistent with state law): patient advised not to drive a motor vehicle; referral to the Department of Motor Vehicles to test driving ability; referral to a driver's safety course that includes assessment of driving ability.
10. Management of comorbid medical conditions
Goal: Comorbid medical conditions are identified in persons with dementia, and HCBS program staff and service providers provide services and supports, including information and training for family and other informal caregivers, to reduce the negative effects of co-morbid medical conditions on the person's cognition and, conversely, to reduce the negative effects of the person's dementia on the management of his/her comorbid medical conditions.
- From the SNP Alliance: plans should account for the presence of comorbidities during the screening and assessment processes.
- From the SNP Alliance: protocols are in place to manage the interactive effects of multiple chronic conditions.
- Ideal measure that should be developed and validated: comorbid health conditions in persons with dementia are identified, and HCBS programs and service providers implement procedures to manage, and assist family and other informal caregivers to manage, the coexisting conditions and reduce the impact of each condition on the others.
11. Safe and effective care transitions
Goal: when persons with dementia are transferred between home, medical, and community settings, information needed to provide appropriate care is transferred with them, and care providers in the new setting, including family and other informal caregivers, know what care to provide and how to get help in an emergency.
- From the National Health Policy Group: medical records are transferred within hours to the new setting.
- From the SNP Alliance: a member of the health care team facilitates communication with new providers in a timely manner to ensure safe and effective care transitions.
12. Involvement and support of family and other informal caregivers
Goal: family and other informal caregivers receive information and support to provide needed care for the person with dementia and minimize the negative health effects of caregiving.
- From ACOVE: if an older person with dementia has a caregiver, then the patient and/or caregiver should be given information on: dementia diagnosis, prognosis, and associated behavioral symptoms; home occupational safety; community resources.
- From the National Health Policy Group: degree to which families/caregivers are included in the care planning process consistent with patient preferences.
- From the National Health Policy Group: degree to which health plans/providers provide caregiver education, training, and support.
- From the Family Caregiver Alliance: when the care plan for a person with dementia is dependent on a family or other informal caregiver, an assessment is conducted to determine whether the caregiver is willing and able to provide the care and what help he or she needs to provide the care.
- From HSRI: proportion of (persons) families who report that services and supports have helped them to better care for their family member living at home.
- From various sources: caregiver self-efficacy, especially questionnaire items that measure the caregiver's confidence in his/her ability to manage behavioral symptoms and find needed services in the community.
13. Reduction in behavioral and psychological symptoms
Goal: HCBS providers are aware of behavioral symptoms in recipients with dementia, identify the causes of the symptoms if possible, institute nonpharmacological interventions to reduce the symptoms, and connect families and other informal caregivers to training programs that help them manage the symptoms.
- From ACOVE: If an older person has dementia, then she/he should be screened annually for behavioral and psychological symptoms of dementia.
- From ACOVE: If an older person with dementia has behavioral and psychological symptoms, she/he should be treated with a behavioral intervention first/concurrently or if treated first with a pharmacologic intervention, documentation should indicate that the problem was severe.
- From OASIS/OBQI: Improvement in behavioral problem frequency.
- Ideal measure that should be developed and validated: proportion of families and other informal caregivers of HCBS recipients with dementia that receives training about how to manage behavioral and psychological symptoms.
14. Reduction in pain
Goal: HCBS providers recognize pain in persons with dementia, including those who are not able to describe their pain or ask for help, and these persons are referred to medical professionals for treatment.
- From Home Health Compare: percentage of patients who have less pain when moving around.
- From HQCI/interRAI: Unmanaged pain: clients who have pain and are receiving inadequate pain control.
- Ideal measure that should be developed and evaluated: HCBS providers are trained to recognize pain in service recipients with dementia.
15. Avoidance of unnecessary hospitalizations and emergency department visits
Goal: HCBS providers support the management of health conditions and behavioral symptoms in service recipients with dementia in ways that reduce emergent, unplanned hospitalizations and emergency room visits.
- From many sources: percentage of people with preventable hospitalizations.
- From Home Health Compare: percentage of patients who need urgent, unplanned medical care.
- From Home Health Compare: percentage of patients who had to be admitted to the hospital.
16. Delay of nursing home placement
Goal: HCBS programs provide services that help to delay permanent nursing home placement for as long as possible given the care needs and safety of the person with dementia and the health and well-being of the family or other informal caregiver.
- From many sources: proportion of persons with dementia who are permanently placed in a nursing home.
- From many sources: time to permanent nursing home placement.
- Ideal measure that should be developed and evaluated: proportion of permanent nursing home placements attributable in whole or in part to unmet need for HCBS.
17. Provision of palliative care
Goal: Persons with dementia should receive palliative care to reduce suffering and improve quality of life; palliative care should be available before people are eligible for hospice care.
- From the SNP Alliance: A comprehensive palliative care plan is developed that includes, but is not limited to, pain management, symptom control, and access to appropriate supportive services.
- From the SNP Alliance: palliative care is provided in the setting of choice.
- Ideal measure that should be developed and validated: HCBS programs and providers give families of people with dementia, and the person, if possible, information about palliative care and discuss with them the potential value of palliative care and options for obtaining it.
18: Client Satisfaction
Goal: Interviews and paper and online surveys are used to evaluate satisfaction with the type, amount, and quality of HCBS provided for persons with dementia, and their responses are used to adjust service types and amounts and for quality improvement purposes. As recommended for the MDS 3.0, persons with dementia are always asked to respond to the survey, and surrogate respondents are also used when the person with dementia is too impaired to respond or his/her responses may be unreliable.
- Client Satisfaction Questionnaire, from N.L. Mumma, "Quality and Cost Control of Home Care Services Through Coordinated Funding," Quality Review Bulletin 13(8):271-278, 1987.
- Dementia Care Networks' Study: Care Recipient Questionnaire, questions 42-82 to be completed by the family or other informal caregiver with the person with dementia; the questions address the person's perceptions of his/her home health care worker, coordination of home care services, assessments for home care, availability and timeliness of services, knowledge of community services, and unmet need. Cockerill R, Jaglal S, Charles LL, Chambers L, Brazil K, and Cohen C. "Components of Coordinated Care." Dementia 5(1):51-66, 2006. Questionnaire available from first author at Rhonda.email@example.com.
- Home Care Satisfaction Measure (HCSM) Geron SM, Smith K, Tennstedt S, Jette A, Chassler D, and Kasten L. "The Home Care Satisfaction Measure," Gerontologist 55:S259-270, 2000, addresses satisfaction with home care services, including home health aide, personal care and case management.
19. Equity in Medicaid eligibility criteria for HCBS
Goal: persons whose care needs are caused or exacerbated by their dementia have equal access to Medicaid HCBS compared with persons whose care needs are caused or exacerbated by physical health conditions, and they are explicitly included in the eligibility criteria for Medicaid HCBS.
- Ideal measure to be developed and validated: the eligibility criteria for Medicaid HCBS include people with the same level of functional impairment and service needs, regardless of the condition that causes the impairment and service needs.
20. Access to and assistance with consumer-directed care
Goal: persons with dementia can receive either consumer-directed or agency-provided services, and those who select, or their family or other informal caregiver selects, consumer-directed care receive information and assistance to help them manage the care.
- The Medicaid HCBS program offers consumer-directed and agency-provided options for all service recipients.
- Information and assistance is provided to help the person and family or other informal caregiver manage and direct care and services.