Appendix VII: Public Comments Submitted Between
March 7 and March 21, 2008
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
- 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
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?
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.
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.
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.
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
Pamela J. Parker
of Human Services
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.
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
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
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.
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.
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.
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
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
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.
National Health Policy Group:
proportion of persons screened to identify impairments in physical
and cognitive functioning annually.
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.
measure that should be developed and validated: proportion of persons whose cognitive ability
to make care decisions has been evaluated.
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.
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
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
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.
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.
National Health Policy Group: Proportion of people who have signed advance
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.
measure that should be developed and evaluated: persons with dementia who live alone are
consistently and correctly identified by HCBS programs and service
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
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
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
HSRI: proportion of (persons) families
who report that services and supports are available when needed, even in a
HCQI/interRAI: number of HCBS
recipients who have ADL/rehabilitation potential but are not receiving occupational
therapy, physical therapy, or exercise therapy.
multiple sources: HCBS specified in
a person's care plan are received.
measure that should be developed and validated: HCBS programs provide the array of HCBS
services needed by persons with dementia.
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.
CAHPS® PWMI: degree to which
consumers found it easy to get someone from Medicaid to help coordinate
their care among different providers or services.
the National Health Policy Group:
proportion of members who can identify the person responsible for
care coordination across settings.
HSRI: proportion of people reporting that
service coordinators help them get what they need.
the National Health Policy Group: degree
to which care plans are shared with all care providers as well as the
the SNP Alliance service providers communicate with the person's
doctor and other medical care professionals to coordinate medical and
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
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.
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
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
- 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 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.
the SNP Alliance: plans should account for the presence of
comorbidities during the screening and assessment processes.
the SNP Alliance:
protocols are in place to manage
the interactive effects of multiple chronic conditions.
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
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.
the National Health Policy Group: medical records are transferred within
hours to the new setting.
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
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.
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
the National Health Policy Group: degree
to which health plans/providers provide caregiver education, training, and
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
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.
ACOVE: If an older person has dementia,
then she/he should be screened annually for behavioral and psychological
symptoms of dementia.
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.
OASIS/OBQI: Improvement in
behavioral problem frequency.
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.
Home Health Compare: percentage of
patients who have less pain when moving around.
HQCI/interRAI: Unmanaged pain: clients who have pain and are receiving
inadequate pain control.
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.
many sources: proportion of persons
with dementia who are permanently placed in a nursing home.
many sources: time to permanent
nursing home placement.
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.
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.
the SNP Alliance: palliative care is provided in the
setting of choice.
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
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
- 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.firstname.lastname@example.org.
- 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
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.
Medicaid HCBS program offers consumer-directed and agency-provided options
for all service recipients.
and assistance is provided to help the person and family or other informal
caregiver manage and direct care and services.
Return to Contents
Proceed to Next Section