U.S. Department of Health and Human Services
Design for Survey of Persons with Mental Retardation and
Developmental Disabilities: Summary of Recommendations for Survey Questions and
Screening Criteria
Rita Stapulonis, Joy Gianolio, Susan A. Stephens and Craig V.D.
Thornton
Mathematica Policy Research, Inc.
November 29, 1989
PDF Version
This report was prepared under contract between the U.S. Department
of Health and Human Services (HHS), Office of Social Services Policy (now known
as the Office of Disability, Aging and Long-Term Care Policy) and Mathematica
Policy Research. For additional information about the study, you may visit the
DALTCP home page at http://aspe.hhs.gov/daltcp/home.shtml or contact the office
at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue,
SW, Washington, DC 20201. The e-mail address is: webmaster.DALTCP@hhs.gov. The
DALTCP Project Officer was Robert Clark.
OVERVIEW
This document contains brief summaries of recommendations for survey
items to be included in the Survey of Persons with Mental Retardation and
Developmental Disabilities. The domains covered by these recommendations are
based on the core set identified in consultation with the Technical Advisory
Group and the Department (see Attachment A.)
The summaries were developed from a set of more detailed working papers
covering each domain. These papers present the rationale behind these
preliminary recommendations and were assembled into a separate document. The
working papers were circulated for comment to various members of the Technical
Advisory Group. Their comments and outstanding issues are noted on the summary
sheets.
Each summary sheet presents the following information:
- A brief definition of the domain or subdomain
- A brief description of each proposed question
- A summary of the response categories for each question
- A list of outstanding issues or comments about the proposed questions
and/or approach to measurement for the domain.
Attachment B indicates the page number of each
summary sheet and also whether each domain is covered in the screener, in the
follow-up survey, or in both.
Two things should be noted about the summaries. First, there is
considerable overlap among the domains and it is somewhat arbitrary in which
domain a particular question appears. For example, questions on limitations in
employment are included under Functional Limitations: Economic
Self-Sufficiency, while employment status and involvement in supported
employment is included in Education/Employment/Training Services. Second, even
focusing only on the "core" domains, there are a large number and wide variety
of questions that could be included on the survey. It will almost certainly be
necessary to reduce the number of questions actually included on the
instrument. Please consider what you would recommend in terms of items that
must be retained and those that could be deleted.
ATTACHMENT A. Comparison of RFP
Research Questions with Core/Non-Core Data Categories |
Data
Category (RFP Research Question) |
RFP |
Core |
Non-Core |
RESIDENTIAL ENVIRONMENT (1,3) |
Types of Living Arrangements |
X |
X |
|
Attributes/Institutonal Character |
X |
X |
|
Quality |
|
|
X |
Residential History |
|
X |
|
DEMOGRAPHIC CHARACTERISTICS (2) |
Age |
X |
X |
|
Sex |
X |
X |
|
Race |
X |
X |
|
Marital Status |
X |
X |
|
Family Structure (household composition) |
X |
X |
|
Income (individual and household) |
X |
X |
|
Participation in Federal Programs |
X |
X |
|
Educational Attainment |
|
X |
|
Identifiers |
|
X |
|
FUNCTIONAL LIMITATIONS (4,6) |
Types of Limitations |
|
|
|
Self-care |
X |
X |
|
Language |
X |
X |
|
Learning |
X |
X |
|
Mobility |
X |
X |
|
Self-direction |
X |
X |
|
Independent Living |
X |
X |
|
Economic Self-sufficiency |
X |
X |
|
Adaptive/Maladaptive Behavior |
|
X |
|
Severity of Limitations |
X |
X |
|
Age of Onset |
X |
X |
|
FORMAL SERVICE USE (5,7,9,10) |
Types of Services |
|
|
|
Health and Medical |
X |
X |
|
Other Formal Services |
X |
X |
|
Equipment/Aides |
X |
X |
|
Quantity of Services |
X |
X |
|
Need for Services |
|
|
X |
Satisfaction with Services |
|
X |
|
Payment for Services |
|
|
|
Insurance Coverage |
X |
X |
|
Source of Payment |
X |
X |
|
Expenditures by
Source Out-of-Pocket Other
sources |
X |
X X |
|
PROVISION OF INFORMAL SUPPORT (5) |
Types of Support/Assistance (including financial
contributions) |
X |
X |
|
Quantity of Support/Assistance |
X |
X |
|
Caregivers' Experiences and Attitudes |
|
|
X |
CATEGORICAL CONDITIONS (6,7) |
Conditions |
|
|
|
Primary diagnosis |
X |
X |
|
Other diagnoses |
X |
X |
|
Health Status |
X |
X |
|
EMPLOYMENT STATUS (8) |
Type/Level of Support |
X |
X |
|
Hours/Earnings |
|
X |
|
PARTICIPATION IN OTHER REGULAR DAILY ACTIVITIES |
|
|
X |
SOCIAL INTERACTION/INTEGRATION |
|
X |
|
SUBJECTIVE WELL-BEING |
|
|
X |
ATTACHMENT B. Survey of Persons with
Mental Retardation and Developmental Disabilities: Overview of Recommended
Questions |
|
Screening
Instrument |
Follow-Up
Instrument |
Categorical Conditions (pp.17) |
X |
X |
Limitations in Functioning |
Self-care (pp.19) |
X (subset) |
X |
Independent living (pp.21) |
X (subset) |
X |
Self-direction (pp.23) |
X (subset) |
X |
Mobility (pp.26) |
X (subset) |
X |
Communication (pp.25) |
X (subset) |
X |
Learning (pp.29) |
X (subset) |
X |
Economic self-sufficiency
(pp.28) |
X (subset) |
X |
Formal Service Use (quantity, payment,
satisfaction) |
Medical services (pp.37) |
|
X |
In-home services (pp.41) |
|
X |
Social/psychological services
(pp.39) |
X (subset) |
X |
Adaptive equipment/assistance
devices (pp.35) |
X (subset) |
X |
Education/employment/training
services (pp.31) |
X (subset) |
X |
Transportation services (pp.43) |
|
X |
Income support services (see
Demographics, pp.51) |
X (subset) |
X |
Residential Environment (pp.44) |
X (including past use) |
X |
Informal Support (pp.49) |
|
X |
Social Interaction and Behavior (pp.47) |
|
X |
Demographics (see also Income Support Services (pp.51)
and Education/Employment/Training Services (pp.31) |
X (subset inlcuded on NHIS core) |
X |
OVERVIEW OF SCREENING MODULE
Background
The Developmental Disabilities Assistance and Bill of Rights Act
Amendments of 1987 provides a definition of developmental disabilities (see
Attachment A) that is the basis of the screen for the
Survey of Persons with Mental Retardation and Developmental Disabilities.
The definition requires that a developmental disability be attributed to
mental and/or physical impairments, manifested prior to age twenty-two, chronic
(likely to continue indefinitely), result in substantial limitations in
functioning in three or more of seven major life activities, and require
individually planned, coordinated, and extended services.
This definition primarily revolves around functional limitations and
requires development of measures of the severity of limitations in seven life
activities and standards for judging the substantiality of limitations in
functioning across life activities. States and specific programs have adopted
many alternative means for judging limitations and substantiality. Also, some
service programs use definitions of developmental disabilities that rely more
on categorical conditions than limits in functioning as key defining
factors.
The variation and inherent imprecision in definitions supports the
decision to adopt a broad screening approach for the Survey of Persons with
Mental Retardation and Developmental Disabilities. Analysts using the survey
data will then be able to use more restrictive definitions of developmental
disabilities to specify subgroups from the survey sample.
Purpose
To establish a valid, reliable, and efficient approach for identifying
the sample of individuals to whom the full set of survey questions should be
administered.
These individuals should include all persons from the national sample
who are likely to be considered developmentally disabled under any of a number
of policy-relevant definitions.
Inclusivity Versus Exclusivity
The screener must balance the two competing goals of inclusivity and
exclusivity. Policy interest in the implications of alternative definitions of
developmental disabilities argues to include in the survey a broad group of
persons who might be developmentally disabled and from which specific groups of
interest can be defined analytically. At the same time, cost considerations
require that the survey be focused as accurately as possible and that it
exclude persons who would not be considered developmentally disabled.
Inclusivity is important so that the survey will support analysis of the
groups of persons classified as developmentally disabled by various state and
federal programs. Inclusivity is also important because of the inherent
imprecision in survey methods. Inclusive screening criteria help to ensure that
the survey include developmentally disabled individuals whose limitations may
not be captured in an interview either because of misreporting or because
available formal or informal services enable a person to perform specific
activities they would unable to perform without assistance.
Exclusivity is important in order to contain the costs of the survey.
The survey should min imize inclusion of persons who would not be considered
developmentally disabled by any likely definition: for example, persons who
have become disabled in adulthood. The need to constrain the size of the sample
screened eligible for the survey may mean that some "at risk" persons will not
be identified and thus not included in the survey.
A comprehensive profile of the national population requires that
children be included in the survey. However, it is important to note that the
functional definition was primarily designed to identify adults. Screening
criteria for children must therefore rely heavily on identification through the
school system for special education services and on progress toward
developmental milestones for pre-school age children.
A comprehensive national profile also requires data on persons with
developmental disabilities living in various group settings and institutional
arrangements. Screening questions will be asked of persons in these types of
living arrangements in order to obtain data comparable to the data collected
from persons living in community settings. However, the screening function of
these question will be less important for persons in facilities who can be
identified as having developmental disabilities from information collected in
the sample development process.
Finally, although persons whose functional limitations are associated
with mental illness rather than other mental or physical impairments are
sometimes excluded from the developmentally disabled population, the survey
will include all persons who meet the functional limitations and age of onset
criteria, regardless of the categorical condition associated with the
limitations.
Categories of Screening Questions
In order to ensure inclusion in the survey of all persons who may be
developmentally disabled, three categories of questions will be asked during
the screening process.
The three categories of screening questions include:
- Categorical Conditions
- Functional Limitations (with onset prior to age 22)
- Use of Selected Services Targeted toward Persons with Developmental
Disabilities
Persons identified as potentially developmentally disabled on any
one of the three categories would be considered eligible for the survey.
Persons excluded from the survey would be those who reported no
conditions generally associated with developmental disabilities, no
functional limitations starting prior to adulthood, and no use of
services often used by persons with developmental disabilities.
Use of questions in any one category as the single screening device
would potentially underrepresent certain persons with developmental
disabilities; taken together no person with developmental disabilities should
be inappropriately screened out of the survey.
Number of Screening Questions
We recommend that the screening questions be administered to a
nationally representative sample of households through a supplement to the
National Health Interview Survey. Thus, a large number of individuals (about
100,000) would be screened for later administration of the Survey of Persons
with Mental Retardation and Developmental Disabilities.
Supplements to the NHIS are expensive (about $100,000 per minute).
Therefore, there is good reason to try to limit the questions on the NHIS
supplement to the smallest number of items that efficiently screen the
sample--that is, to use the fewest number of questions needed to identify
persons with developmental disabilities. This would reduce the cost of the
screening effort and the burden on respondents.
Even if a small set of items for the screen could be identified, the
number of questions and type of questions on the proposed NHIS supplement
should not be restricted unduly. Detailed information on functioning is needed
to operationalize many policy relevant definitions of developmental
disabilities. Other information is required to identify subgroups of interest,
such as degree of formal support provided in the residential setting. If a
relatively broad set of functioning and service use items were collected from
the large national sample screened by the NHIS supplement, this would permit
(1) more accurate and complete descriptions of the developmentally disabled
population from the screening data alone, even before the full survey was
administered, (2) comparison of the developmentally disabled population with
the nondisabled population and with the population of persons with other
disabilities, and (3) evaluation of the sample size and efficiency associated
with various criteria for selecting the sample of persons for the full survey
(i.e., various combinations of characteristics, for example, combinations of
categorical conditions and functional limitations).
Recommendation for a Pilot Test of Screening Questions
and Criteria
There does not appear to be good evidence at the present time as to what
set of questions' would be both accurate and efficient. For this reason, we
believe that a relatively large pilot test of the screening instrument is
warranted. Such a test would ensure that the screening questions accurately
identify persons known to be developmentally disabled while not including an
undue number of persons known not to be developmentally disabled. The pilot
test would also help determine if there is a small set of items that are
accurate and efficient discriminators between these two groups so that the NHIS
screening supplement can be as efficient as possible.
Recommended Screening Questions and Criteria
The attached charts (see Attachment B) present
in diagrammatic form the process by which individuals in the NHIS sample would
be screened for the Survey of Persons with Mental Retardation and Developmental
Disabilities. The charts indicate the specific questions in each of the three
categories (conditions, functional limitations, and service use) that would be
used in screening. The charts also indicate our preliminary recommendations
about criteria for screening decisions (who to include in the full survey and
who to exclude).
All individuals in the NHIS sample would be asked the full set of
screening items on the supplement; that is, even if an individual was deemed to
be eligible for the full survey on the basis of responses to a particular item
on the screening supplement, information on the other screening items would
also be obtained. This would provide a complete set of screening and
descriptive data on all individuals in the NHIS sample for preliminary
analysis. In addition, the screening questions would be repeated in the full
survey to verify and update the screening information and to set the context
for other questions.
Please refer to the Summary of Recommended Questions for more details on
the selection of items, question wording, and response categories. Also note
that additional questions related to a screening item (such as the adequacy of
the performance of a functional activity) are recommended for the full
survey.
A severe, chronic condition which:
-
is attributable to a mental or physical impairment or a combination
of mental or physical impairments;
-
is manifested before the person attains age twenty-two;
-
is likely to continue indefinitely;
-
results in substantial functional limitations in three or more of
the following areas of major life activity:
- self care
- receptive and expressive language
- learning
- mobility
- self-direction
- capacity for independent living and
- economic self-sufficiency; and
-
reflects the person's need for a combination and sequence of
special, interdisciplinary, or generic care, treatment or other services which
are of lifelong or extended duration and are individually planned or
coordinated.
Autism
Blindness*
Cerebral Palsy
Childhood
schizophrenia
Cystic Fibrosis
Deafness*
Deafness and
blindness*
Development Delay
Down's Syndrome
Epilepsy
Genetic
syndrome affecting development (other than Down's Syndrome)
Head injury or
trauma*/Brain damage*
Hearing impairments*
Infantile Paralysis
(Polio)
Mental retardation
Microcephaly
Missing or malformed
limbs*
Multiple Sclerosis (M.S.)*
Muscular Dystrophy
(M.D.)
Osteogenesis Imperfecta
Paralysis (other than those due to
Cerebrel Palsy or Polio)*
Severe emotional disturbance or mental
illness*
Sickle-Cell Anemia
Spina Bifida
Spinal Cord
injury*
Tourette's disease
Visual impairment*
Any other serious
condition beginning before age 22
* Conditions which require a follow-up question regarding when condition
first occurred or was first diagnosed.
FIGURE 1. Screening
on Categorical Conditions List |
|
FIGURE 2. Screening of Functional
Limitations |
|
FIGURE 3. Screening on Use of Selected
Services |
|
*Categorical Conditions
Defined
The underlying mental or physical health conditions) associated with the
sample member's impairment(s)/functional limitations/disability.
Instrumentation
NHIS Core |
- Asked with respect to limitations) of activities
- condition which causes limitation
- other condition which causes limitation
- limitation caused by any (other) specific condition
- Main cause of limitation (condition)
Limitations from surgery and/or pregnancy are excluded
|
Conditions to Screen |
|
Issues/Questions
- The value of the NHIS core information is limited by the condition
coding procedures used by NCHS.
- Should rare conditions be added to the conditions list?
*Items recommended as screening criteria. See Overview of Screen,
Figure 1.
Overriding Issues: Functional Status
-
Performance versus capacity. In measuring functional
limitations in the seven key life areas it is recommended that the study
measure the individual's current performance as opposed to their assumed or
judged capacity. Measuring capacity would result in severe reliability problems
since respondents and proxies would be rating behavior based on standards that
would doubtless vary from case to case, especially since proxies will include
both relatives, informal care providers, and staff. While measuring performance
also raises measurement issues--such as the person who can (capacity) do
housework but doesn't (performance)--the performance measure is much more
concrete and leaves less room for subjective interpretation.
-
Age. Limitations in seven key life areas are highly variable
upon age. An individual's "limitation" in a certain area may be a function of
age and not a developmental disability. In the MR/DD survey, questions that are
inappropriate to an individual because of age will not be asked (i.e.
self-medicating for children, and economic self-sufficiency for non-working
aged individuals). Other variables have recommended age limits (for example,
self-direction questions are asked of age 12+, mobility questions of age 3+,
self-care questions (except medicating) asked of age 5+).
-
Residence. As with age, an individual's residential setting
affects the opportunities that individual has to perform in key life areas. For
example, in more "institutional" settings some self-care activities (such as
administration of medications and independent living activities) may be
routinely performed by staff and in fact not permitted for residents. However,
we recommend that all age-appropriate questions in the key functioning areas be
asked of institutionalized individuals and that the settings be taken into
account during analysis.
*Functional Status: Limitations in Self-Care
Defined
Primarily the traditional activities of daily living:
- dressing
- continence
- eating
- bed/chair transfer
- bathing
- self-medicating
- toileting
Instrumentation
Dressing |
- * Use of human assistance, supervision, special equipment
- Adequacy: pain/discomfort, mistakes, no problems
|
Eating |
- How accomplished: standard utensils, special utensils, tube
feeding
- * Use of human assistance, supervision, special equipment
- Adequacy: time-consuming, tiring, trouble chewing/swallowing,
keeping food down
|
Bathing |
- How accomplished: bed bath, sponge bath, shower, bath
- * Use of human assistance, supervision, special equipment
- Adequacy: pain/discomfort, forgetting to bathe, trouble bathing
as often as would like, no problems
|
Toileting |
- Method (urinary): catheter, bedpan, absorbent pads,
standard/modified toilet
Method (bowel): colostomy bag, bedpan, absorbent
pads, standard/modified toilet
- * Use of human assistance, supervision, special equipment
- Adequacy: forgetting to go or attend to equipment,
pain/discomfort/takes longer, emptying thoroughly/going as often as would like,
no problems
|
Continence (urinary and bowel) |
- Number of accidents: never, 1-2/week, 3+ a week
|
Bed/Chair Transfer |
- * Use of human assistance, supervision, special equipment
- Adequacy: pain/discomfort/takes longer, don't do as often as
would like, no problems
|
Self-Medicating (first aid and prescription
medication) |
- Level of assistance: none, with supervision, family/staff
completes task, medical staff completes task
|
Issues/Questions
- Is, for example, "getting dressed" too general? Should it be broken
down into: puts on pants, ties shoes, can button/use zipper, etc.
- Should pain/discomfort be included in the response categories --
people with DD have generally grown up with pain and/or discomfort (comment is
applicable to all functional variables).
- Are the response categories applicable to various types of living
arrangements i.e., minimally supervised living arrangements. Or, are the
response categories geared to extremes living independently and institutional
life.
* Items recommended as screening criteria.
*Functional Status: Limitations in Independent
Living
Defined
Primarily the traditional instrumental activities of daily living:
- meal preparation
- household chores
- using the telephone
- doing laundry
- household repairs/yardwork
- purchasing personal items
Instrumentation
Meal Preparation |
- General method: prepared at home (with/without assistance), eat
in dining hall, meals are delivered, someone else prepares meal, generally eat
out
- * If prepared at home: use of human assistance, supervision,
special equipment
- Adequacy: forgets to cook, pain/discomfort/time consuming,
makes mistakes/trouble finishing, no problems
|
Household Chores |
- General method: does it oneself (with/without assistance), a
service of the residence, friend/family cleans, paid service
- * If does it oneself: use of human assistance, supervision,
special equipment
- Adequacy: forgets a chore, pain/discomfort/time consuming,
mistakes/trouble finishing, no problems
|
Using the Telephone |
- * Use of human assistance, supervision, special equipment
- Adequacy: forgets how to use, pain/discomfort/time consuming,
makes mistakes/trouble completing call, no problems
|
Doing Laundry |
- General method: does it oneself (with/without assistance), a
service of the residence, friend/family launders, sends laundry out
- * If does it oneself: use of human assistance, supervision,
special equipment
- Adequacy: forgets to launder, pain/discomfort/time consuming,
makes mistakes/trouble finishing laundry, no problems
|
Household Repairs/Yardwork |
- General method: does it oneself (with/without assistance), a
service of the residence, family/friend does repairs/yardwork, pay for
services
- * If does it oneself: use of human assistance, supervision,
special equipment
- Adequacy: forgets a chore, pain/discomfort/time consuming,
makes mistakes/trouble finishing, no problems
|
Securing/Purchasing Personal Items |
- See Money Handling in Self-Direction Section
|
Issues/Questions
- Does the food preparation item preclude life in a group home where
residents assist in food preparation and may or may not be served by
staff?
- Should a different measure of assistance be used:
human
assistance
- occasionally, 2-3 times/week
- frequently, short time each day
- continuously during waking hours/24 hrs.
and/or
- need for special equipment
and/or
- person can function only in barrier-free environment
*Items recommended as screening criteria.
*Functional Status: Limitations in Self-Direction
Defined
- Independence in selecting/arranging services and activities
- Ability to manage finances
- Ability to defind and/or advocate for oneself
- Need for supervision
Instrumentation
Independence in Selecting/Arranging Services and
Activities: |
|
personal care attendant |
- Chooses unassisted, chooses with assistance from personal
unpaid friend, chooses with assistance of family member, chooses with
assistance of legal guardian, chooses with assistance of agency/school staff,
does not choose/choice made by unpaid friend/family member/legal
guardian/agency or school staff
|
residence |
- * Chooses unassisted, chooses with assistance from personal
unpaid friend, chooses with assistance of family member, chooses with
assistance of legal guardian, chooses with assistance of agency/school staff,
does not choose/choice made by unpaid friend/family member/legal
guardian/agency or school staff
|
current job |
- * Chooses unassisted, chooses with assistance from personal
unpaid friend, chooses with assistance of family member, chooses with
assistance of legal guardian, chooses with assistance of agency/school staff,
does not choose/choice made by unpaid friend/family member/legal
guardian/agency or school staff
|
leisure activities |
- * Chooses unassisted, chooses with assistance from personal
unpaid friend, chooses with assistance of family member, chooses with
assistance of legal guardian, chooses with assistance of agency/school staff,
does not choose/choice made by unpaid friend/family member/legal
guardian/agency or school staff
|
Defend/Advocate for Oneself |
- * Have legal guardian: yes/no
- * Have representative payee: yes/no
- * Give consent for medical care: unassisted, with assistance
from personal unpaid friend, with assistance of family member, with assistance
of legal guardian, with assistance of agency/school staff, does not give
consent/consent given by unpaid friend/family member/legal guardian/agency or
school staff
|
Financial Management |
- * Shop for yourself: yes/no
- Pay money to clerk: by self, someone helps
- Who helps: __________
- Person receives bills (i.e. telephone bill: yes/no
- Take care of bills: by self, someone helps
- Who helps: __________
- Have bank account: yes/no
- Make deposits/withdrawals: by self, someone helps
- Who helps: __________
|
Need for Supervision |
- * Feel comfortable being alone for 1+ hours at a time:
yes/no
- * Level of supervision in past week: minimal (every now and
then), during daytime hours only, constant/round-the-clock
- Length of time (months/years) this level has been required
|
Issues/Questions
- Should response categories for "choice" be revised as
follows:
Choices are made . . .:
- unassisted (by self)
- primarily by self with help or advice from __________
- by concensus between self and __________
- by __________ with input from individual
*Items recommended as screening criteria.
*Functional Status: Limitations in Receptive/Expressive
Communication
Defined
Ability to engage in the communication of needs, attitudes, and ideas
with others and to receive and provide imput in social interchange:
Instrumentation
Mode |
- * Expressive (primary mode): speaks, non-verbal
gestures/grunts, sign language, communication board/other device, does not
communicate
- Expressive (secondary mode): non-verbal gestures/grunts,
speaks, sign language, communication/board/other device
- * Receptive (primary mode): speech, non-verbal gestures, sign
language, communication board/other device, does not understand any
communication
- Receptive (secondary mode): non-verbal gestures, speech, sign
language, communication board/other device
|
Adequacy |
- * Expressive: understood easily by strangers and intimates,
understood partially/with difficulty by strangers, understood only by
intimates, little can be understood by strangers or intimates, does not attempt
communication
Receptive: understands strangers and intimates easily,
understands strangers partially/with difficulty, understands only intimates,
understands little by strangers or intimates, does not attempt to communicate
|
Issues/Questions
- Two main types of impairments in receptive/expressive
communication--physical (sensory, mechanical) and cognitive. Should this be
more fully addressed?
*Items recommended as screening criteria.
*Functional Status: Limitations in Mobility
Defined
Primarily the traditional activities of daily living:
- walking/wheelchair use
- use of stairs
- ability to lift/carry
- use of automobile
- outside mobility
- use of public
- inside/in-home mobility
- transportation
Instrumentation
Walking/Wheelchair Use (ambulation) |
- Determined through use of assistive devices and other mobility
variables
|
Lifting and Carrying |
- Ability to lift and carry 10 lbs. (bag of groceries): use of
human assistance, supervision, special equipment
- Adequacy: pain/discomfort/time consuming, cannot do as often as
would like, no problems
|
Outside Mobility |
- * Use of human assistance, supervision, or special
equipment
- Adequacy: pain/uneasiness/time consuming, can't go out as often
or as many places as would like, no problems
|
Inside Mobility |
- * Use of human assistance, supervision, or special
equipment
- Adequacy: pain/discomfort/time consuming, can't go as far or as
often as would like, no problems
|
Use of Stairs |
- * Use of human assistance, supervision, or special
equipment
- Adequacy: pain/discomfort/time consuming, can't climb as many
as would like or stairs prevent person from going places, no problems
|
Use of Automobile |
- With vehicular modifications, without modifications, unable to
drive
- Adequacy: pain/discomfort, can't drive as far or as often as
would like, no problems
|
Use of Public Transportation |
- Types used in past 4 weeks: bus (specially equipped or not),
train, subways taxicab, van
- Use of human assistance, supervision, or special equipment
- Adequacy: pain/discomfort, can't travel as often or as far as
would like, no problems
|
Issues/Questions
- Should mobility for people who are blind be explicitly
addressed?
*Items recommended as screening criteria.
*Functional Status: Limitations in Economic
Self-Sufficiency
Defined
The ability to work and maintain employment:
- vocational skills
- work habits
- job finding
- earning capacity/income adequacy
Instrumentation
NHIS Core |
- Is person limited in kind/amount of work he/she can do -- based
upon major life activity:
- work
- housework
- school
- play
|
Vocational Skills |
- Covered under cognition/retention/reasoning in learning section
(i.e. the ability to learn and apply job skills)
|
Job Finding |
- * Completes job applications: use of human assistance or
supervision
- * Job interviews: with human assistance or
support/supervision
|
Earning Capacity/Income Adequacy |
- Steady source of income for basic needs: yes/no
- Enough money for "extras" or special items: yes/no (See also
Demographics and Employment Services Sections)
|
Issues/Questions
- How do we want to differentiate or classify productivity (i.e.
volunteer work) from economic self-sufficiency. We should also consider the
gender bias of economic self-sufficiency and determine how to measure the value
of contributing to an economic unit (i.e. homemaker).
*Items recommended as screening criteria.
*Functional Status: Limitations in Learning
Defined
The ability to acquire new knowledge and skills and to apply one's
experiences in new situations:
- cognition
- retention
- reasoning
- academic skills
Instrumentation
Cognition/Retention/Reasoning |
- * For learning (cognition) a series of tasks, each task more
complex (reasoning) and requiring greater cognitive skills than the former, the
individual will be asked:
- Level of assistance needed to learn (the task): written
instructions only, 1-2 demonstrations, tasks broken into smaller segments,
intense/constant coaching
- Ability to remember how to accomplish (task): cannot
remember/must be continuously reminded, can remember after several repetitions,
can remember most without reminding
|
Retention |
- Basic facts (Mental Status Questionnaire):
- date
- year
- day of week
- age
- name of president, etc.
|
Reasoning |
- Application of previously learned knowledge/skills in new
situation: can do without new instruction/help, need written instruction only,
1-2 demonstrations, task broken into smaller segments, intense/constant
coaching or prompting
|
Limitations in School |
NHIS Core Items (school-aged children)
- * impairment keeps child from attending school: yes/no
- * Because of impairment, child attends special school or
classes: yes/no
- * Because of impairment, child needs to attend special school
or classes: yes/no
- * Because of health child is limited in school attendance:
yes/no
Additional Items (school-aged children and adults)
- Writing ability:
- Writes
- Letters/lists
- Short sentences
- Prints words
- Traces or copies name/words
- Cannot write/print/trace/copy
- Reading ability:
- Reads newspapers/magazines/most books
- Reads books for children/adolescents
- Reads simple stories/comics
- Reads street signs etc.
- Recognizes no words/signs
- Mathematical ability:
- Does addition/subtraction
- Can count items (up to 10)
- Counts aloud from 1 to 10
- Counts up to 2 items
- Understands one versus many
- No understanding of numbers
|
Issues/Questions
- Is the Mental Status Questionnaire, usually asked of the elderly,
appropriate for the MR/DD population?
- Is the recommended measure of reasoning too complex to measure? Is
there a better way to operationalize this variable?
- Since most DD children are in regular classes, are the items on
reading/writing/mathematical ability sufficient to measure limitations in
academic skills or should an item be added on the need for "special help or
assistance" in school?
- Distinguish primary and secondary obstacles to learning. For example,
sensory or physical disabilities may interfere with accessing what is to be
learned. While this is a limitation, it is secondary in nature to cognitive
disabilities.
*Items recommended as screening criteria.
*Employment and Educational Services
Defined
Jobs and job-support services as well as education and training:
Employment |
Education |
- Employment/labor force status
- Type of work/integration
- Use/satisfaction with services
- Support network
- Wages
- Hours
- Earnings
- Access/Transportation
|
- Service use
- Satisfaction with services
- Connection with employment status
|
Instrumentation
Labor Force Status |
- Currently have job: yes/no
- If no, currently looking: yes/no
- Occupation (covered in NHIS core)
|
Integration |
- * Setting: regular job, sheltered workshop, work/day activities
center, volunteer, work/study
|
Training Program |
- * Is job part of training program: yes/no
|
Supported Employment |
- * Presence of someone at work who helps person learn the job:
yes/no
- Presence of someone at work who person can ask questions:
yes/no
- Who is person: __________ (write-in)
- parent
- friend/co-worker (also, is it person's ob to train?)
- job coach (training program) -- (name of program
- supervisor (also, does supervisor work for employer versus
training program?)
- Do you pay the person who is helping you?
|
Hours/Wages |
- Days of week usually at work: Monday-Friday
- Hours worked most days: ___ ___ . ___ hours
- per day
- per week
- variable
- Is person paid: yes/no
- Amount of pay: $___, ___ ___ ___ . ___ ___
- per piece
- per hour
- per day
- per week
- per two weeks/semi-monthly
- per month
- combination of rates
- Frequency of pay: everyday, every week, every two
weeks/semi-monthly, every month
|
Transportation to Work |
- How person usually gets to work and back:
- driven by parents/friends/houseparents
- picked up in van/car/schoolbus/special bus
- taxi
- public bus/other public transportation
- walk/bicyle
- drive oneself
- works at residence no transportation needed
- other __________ (specify)
If driven:
- Who drives person to work: __________ (write-in)
- relative
- friend
- staff member
If picked up by van/bus/car, etc.:
- Whose vehicle picks person up: __________ (write-in)
- friend/relative
- staff member
- employer
- Is it friend's job to pick person up: yes/no
- Where is staff member from: __________ (write-in)
If person
takes taxi:
- Who calls taxi: person does by self, someone else does at least
sometimes/it is prearranged
- Who is the person who calls taxi: __________ (write-in)
- relative
- friend
- staff member
- employer
- Is it friend's job to call taxi: yes/no
- Where is staff member from: __________ (write-in)
|
Satisfaction with Services |
- For each service: very satisfied, satisfied, Services neither
satisfied/dissastisfied, dissatisfied, very dissatisfied
- Why dissatisfied:
- Receives too little/too much of service
- Service is not appropriate to needs
- Not reliable
- Not timely, too expensive
- Problem with provider's attitude
- Problem with transportation
- Other __________ (specify)
|
Educational Services Ever Received |
- * Special school (residential - during academic year only),
special school (day), special class in regular school, resource room in regular
school, regular class in regular school, regular class in regular school,
homebound education, special residential school (out of state), residential
facility for persons with disabilities, residential facility for persons with
mental illness, challenging behavior, not applicable (no formal education)
|
Early Intervention (Service is Defined in Memo) |
- * Received services: yes/no (also covered in the In-Home
Services Section)
|
Current Educational Status |
- Now in school: yes/no
- Name of school: __________ (write-in)
- Is person learning about job and work in school: yes/no
- How is person learning about work/jobs: classes only, job
only, both classes and job
- Is this same job as previously mentioned: yes/no (if no,
ask job questions)
|
Other Vocational Programs |
- Aside from previously mentioned job/school programs are there
any others which teaches person about jobs/work: yes/no
- Name of program: __________ (write-in)
|
Satisfaction With Services |
- For each service: very satisfied, satisfied, neither satisfied
or dissatisfied, dissatisfied, very dissatisfied
- Why dissatisfied:
- Receives too little/too much of service
- Service is not appropriate to needs
- Not reliable
- Not timely
- Too expensive
- Problem with provider's attitude
- Problem with transportation
- Other __________ (specify)
|
Reasons for Not Working |
- If determined person is not working (or looking for work)
through job, school, or training program:
- Health reasons
- Attending school
- Retired, homemaker
- Caring for children
- Caring for adults
- Lack of transportation
- Lack of job skills
- Discrimination
- Fear of losing SSI or other benefits
- Other __________ (specify)
|
Issues/Questions
- Enclaves may not be distinguished from supported employment or
regular employment.
- Job tenure is not measured.
*Items recommended as screening criteria.
*Adaptive Equipment/Assistive Devices
Defined
The medical equipment/special aids used or the physical/structural
modifications made to one's residence as a result of his/her impairment:
- Types of equipment/aids
- Types of modifications
- Payment mode
- Satisfaction
Instrumentation
Types of Equipment/Aids |
- Current use:
- * Manual wheelchair
- * Motorized wheelchair
- * Crutches
- Cane
- Walker
- Leg, back, or other type of brace
- Special shoes
- Artificial arm or leg
- Hearing aid
- * Communication board
- Glasses or contact lenses
- Guide dog
- * Respirator
- Kidney dialysis machine
- * Feeding tube/machine
- Colostomy bag
- Urinary catheter
- Velcro fasteners or snaps
- Special dishes, cups, or utensils
- Other __________ (specify)
- None
|
Types of Residential Modifications |
- Currently have in residence:
- Grab bars, and/or railings
- Shower seat or tub stool
- Hand held shower
- Raised toilet
- Portable toilet
- Specially equipped telephone (TTY, TTD, or amplified)
- Widened doorway
- Ramp
- Removed door sills/raised threshold
- Repositioned light switches, electrical outlets, and/or
heating and cooling controls
- Adjusted height of cabinets/storage areas, counter tops,
sinks
- Changed or repositioned sink or shower controls
- Faucets on side or front of sinks
- Lever-style door handles
- Emergency alarm
- Visual signals for telephone or door
- Braille or raised markings
- Accessible parking space or garage
- Sidewalks with curb cuts
- Other __________ (specify)
|
Payment Mode |
- Who paid/is expected to pay for costs of services: sample
member/family, Medicare/medicare HMO, Medicaid, Veteran's benefits,
CHAMPUS/CHAMPVA, private insurance/non-Medicare HMO, other, no cost of sample
member/family/third party
- Any costs incurred by sample member/family: yes/no
- Total paid by sample member/family excluding insurance
paybacks
|
Satisfaction With Equipment/Modifications |
- For each service: satisfaction with availability of equipment,
cost, way equipment works, adequacy of home modifications:
- Very satisfied
- Satisfied
- Neither satisfied or dissatisfied
- Dissatisfied
- Very dissatisfied
|
Issues/Questions
- Is "communication board" too specific? Should a more general term be
used such as "assistive communication device"?
- Addition of fire safety residence modifications: fire doors, wall to
roof compartmentalization, alarm systems, etc.
*Items recommended as screening criteria.
Medical and Health Services
Defined
Services received which are related to one's physical health -- either
direct results of one's impairment or of other current or chronic
condition:
Types of services (doctor visits, hospital stays, nursing home stays,
dental visits, emergency health, medication/supplies,
physical/occupational/speech/hearing therapy)
- Frequency of use
- Payment mode
- Satisfaction
Instrumentation
NHIS Core |
- Overnight hospital stays (13-month period)
- Date of admission
- Number of nights spent
- Reason for hospitalization
- Whether surgery was performed
- Name/address of hospital
- Doctor visits (2-week period)
- Date of visit
- Setting
- Physician specialty
- Whether surgery was performed
- Location (city, county, state)
Also collected: number of times family member received
health care/medical advice/prescription/test results over telephone
- Number of medical doctor/assistant visits in past 12
months
|
Additional Questions on Frequency |
- Number of times in nursing home/convalescent home/similar
place
- Total number of nights in nursing home/convalescent
home/similar place
- Number of dental visits
- Number of emergency room/emergency treatment center visits
- Frequency of purchases:
- Prescription drugs
- OTC medications
- Incontinence supplies
- Other
- Frequency of therapy:
- Physical
- Occupational
- Speech/hearing
|
Payment Mode |
- Who paid/is expected to pay for costs of services:
- Sample member/family
- Medicare/medicare HMO
- Medicaid
- Veteran's benefits
- CHAMPUS/CHAMPVA
- Private insurance/non-Medicare HM
- Other
- No cost to sample member/family/third party
- Any costs incurred by sample member/family: yes/no
- Total paid by sample member/family excluding insurance
paybacks
|
Satisfaction with Services |
- For each service: very satisfied, satisfied, neither satisfied
or dissatisfied, dissatisfied, very dissatisfied
Reason for
dissatisfaction:
- For each service: very satisfied, satisfied, neither satisfied
or dissatisfied, dissatisfied, very dissatisfied
- Why dissatisfied:
- Receives too little/too much of service
- Service is not appropriate to needs
- Not reliable
- Not timely
- Too expensive
- Problem with provider's attitude
- Problem with transportation
- Other __________ (specify)
|
Issues/Questions
- Reference period for receipt of each service must be determined
- Is satisfaction with services a relevant and/or useful question for
this survey effort, especially since most respondents are expected to be
proxies.
Social and Psychological Services
Defined
Services received which are related to one's social needs and mental
health needs -- either direct results of one's impairment or of other life
circumstances
- Types of services
- Frequency of use
- Payment mode
- Satisfaction
- Provider (residential setting, other agency)
Instrumentation
Case Management |
- * Ever received (several examples of case management are given
in the instrument): yes/no
- Provided as part of residential environment: yes/no
- Provided by one agency or more than one
- Does agency mostly serve MR/DD/mental health
- Name of agency: __________ (write-in)
- Number of visits from agency in past 12 months
|
Mental Health Services |
- Received in past month any mental health program/day treatment
program, or partial hospitalization for all/part of the day
- Number of days received
- Were services part of residential arrangement
- Visits in past month with mental health professional (i.e.
psychologist, social worker, psychiatric nurse) or attended group sessions
- Number of visits/sessions
- Were services part of residential arrangement
- Hospitalized overnight in past year for mental health reasons:
yes/no
- Number of times hospitalized
(This information can be obtained in the NHIS core under
"reasons for hospitalization" but may be added in this more specific
format)
- Attend in past month adult day care program
- Number of days attended
- Were services part of residential arrangement
|
Payment Mode |
- Who paid/is expected to pay for costs of services:
- Sample member/family
- Medicare/medicare HMO
- Medicaid
- Veteran's benefits
- CHAMPUS/CHAMPVA
- Private insurance/non-Medicare HMO
- Other
- No cost of sample member/family/third party
- Any costs incurred by sample member/family: yes/no
- Total paid by sample member/family excluding insurance
paybacks
|
Satisfaction with Services |
- For each service: very satisfied. satisfied, neither satisfied
or dissatisfied, dissatisfied, very dissatisfied
Reason of
dissatisfaction:
- For each service: very satisfied, satisfied, neither satisfied
or dissatisfied, dissatisfied, very dissatisfied
- Why dissatisfied:
- Receives too little/too much of service
- Service is not appropriate to needs
- Not reliable
- Not timely
- Too expensive
- Problem with provider's attitude
- Problem with transportation
- Other __________ (specify)
|
Issues/Questions
- Since most of the MR/DD population receives assistance for
"maladaptive behavior" through behavioral intervention serivces provided by
specialized MR/DD agencies, the distinction should be made between these
specialized services and the generic mental health services
- Terminology: use adult development services or adult habilitation
services in place of adult day care -- should avoid confusion with day programs
for frail elderly. Furthermore, are these programs purely for adults?
- In the "Adult Day Care" section, should information be collected on
the reasons for enrollment -- acquire job skills, learn activities of daily
living.
*Items recommended as screening criteria.
In-Home Services
Defined
Services provided by formal caregivers in the residential setting that
are not part of the residential arrangement:
Types of services
- Personal attendants (self-care/personal needs)
- Household chores/home-delivered meals
- Home health aide and visiting nurse/occupation and physical
therapy
- Respite care
- Early intervention
Instrumentation
Personal Attendants |
If one or more of the self-care, mobility, communication, use of
assistive devices activities require help/supervision:
- Who is person that helps: __________ (write-in)
- Is person paid to help with these things is it part of their
job: yes/no
- Frequency of services in past month
|
Household Chores/Home-Delivered Meals |
If these activities are required (limitations in independent
living):
- Who is the person who (helps with cleaning/brings in your
meals)? __________ (write-in)
- Is person paid to help with these things is it part of their
job: yes/no
- Frequency of services in past month
|
Home Health Aide/Visiting Nurse/Occupation and
Physical Therapy |
- Has home health aide/visiting nurse come to person's residence
in past month to change dressing, take blood pressure, etc.? yes/no
- Frequency in past month
- Has physical/occupational therapist come to person's residence
to provide therapy in past month? yes/no
- Frequency in past month
|
Respite Care |
- Has someone other than friends/family members cared for person
in past 6 months in order to provide primary informal caregiver a break:
yes/no
- Frequency in past 6 months
- Usual length of breaks
- Location: sample member's residence, day care facility, other
facility, other __________ (specify)
|
Early Intervention (For Children 0-3 Years) |
- Received service: yes/no
- Frequency
|
Payment Mode |
- Who paid/is expected to pay for costs of services:
- Sample member/family
- Medicare/medicare HMO
- Medicaid
- Veteran's benefits
- CHAMPUS/CHAMPVA
- Private insurance/non-Medicare HMO
- Other
- No cost of sample member/family/third party
- Any costs incurred by sample member/family: yes/no
- Total paid by sample member/family excluding insurance
paybacks
|
Satisfaction with Services |
- For each service: very satisfied, satisfied, neither satisfied
or dissatisfied, dissatisfied, very dissatisfied
- Reasons for dissatisfaction:
- Receives too little/too much
- Not appropriate to needs
- Not reliable
- Not timely
- Too expensive
- Problem with provider's attitude
- Other __________ (specify)
|
Issues/Questions
- The same information should be collected even if the services are
part of the residential arrangement.
Transportation Services
Defined
Types of services used to go to:
- Employment/day activity
- Leisure/social events
- Shopping/chores/errands
- Health care/doctor visits
- Frequency of use
- Payment mode
Instrumentation
Transportation to Work |
- Covered under Employment Services
|
Transportation to:
- leisure/social
- shopping/chores/errands
- health care/doctor visits
- other day activity
|
- How person usually gets to activity:
- Driven by parents/friends/houseparents
- Picked up in van/car/special bus
- Taxi
- Public bus/other public transportation
- Walk/bicycle
- Drive oneself
- All activities are at residence or Transportation is part
of residence program
- Other __________ (specify)
- Most frequent mode of transportation
- If person is driven or picked up, a series of questions
determine who (formal informal) provides transportation. If person takes a
taxi, it is determined who calls.
|
Payment Mode |
- Who paid/is expected to pay for costs of services: sample
member/family, no cost
- Any costs incurred by sample member/family: yes/no
- Total paid by sample member/family excluding insurance
paybacks
|
*Residential Environment
Defined
Residential environment in the Survey of Persons with Mental Retardation
and Developmental Disabilities will be defined as follows:
Dimensions:
- Size
- Relationship to others in H.H.
- Services provided
- Type
- Level of supervision (constant vs. protective oversight)
Instrumentation
NHIS Core |
- Number of persons in household (H.H.)
- Relationship of people to each other
|
*Added Questions for NHIS "Special Places" |
- Any persons paid to live in H.H. as staff: yes/no
- Any persons who live in H.H. and rent rooms to others
(roomers/boarders): yes/no
- For facilities with <15 people, characteristics of
residents:
- Gender
- Age
- Disability status
- Facilities with >15 people:
|
Services Provided in Residence |
- Services:
- Counseling/supervision (round-the-clock part-time)
- Meals
- Laundry/housecleaning
- Personal care assistance
- Medical/nursing assistance
- Day activity (See Social/Psychological Services
Section)
|
Public/Private Operation |
- Individual/family/partnership, public agency, private
agency
- If public: state, local, county Name of agency __________
- If private: religious, not-for-profit, for-profit
- Licensed/certified by state, county, local agency Name of
agency __________
|
Group Home Staff--Asked of Staff (Questions for Large
Institutions May Be Based On NMES) |
- Number of staff living here during the week
- Number living here on any given day
- Number working here during the week
- Number involved with supervision of residents
- Specific duties
- Average hours worked per week
- Average hours worked per week in each of the following:
- Administration
- Maintenance/housekeeping
- Education/day programming
- Medical/nursing services
- Other therapeutic services
|
Payment for Services |
- Who is expected to pay:
- Sample member/family
- Medicare
- Medicaid
- Veteran's benefits
- Private insurance
- State/local agency
- Other
- No cost to sample member/family/third party payor
- Any costs paid by sample member/family
- Amount paid last month (nonreimbursable) by sample
member/family
|
Satisfaction with Services |
- Very satisfied, satisfied, neither satisfied or dissatisfied,
dissatisfied, very dissatisfied
- Reasons for dissatisfaction:
- Not appropriate to needs
- Cost
- Roommate conflicts
- Staff conflicts
- Not convenient (transportation/other places)
- Not attractive/sanitary/safe
- Neighborhood not safe
|
Interviewer Observation of Environment |
- Number of bedrooms (separate or not), number of public rooms,
nature of neighborhood, external signs of "group home", evidence of
health/safety problems
|
Choices in Residential Services |
- Covered in Self-Direction
|
Issues/Questions
- Are the recommended questions sensitive enough to identify
individuals living with people who are not disabled in a "homelike" way -- not
a mini-facility/institution/group home?
- Will service questions measure help/caregiving which is provided but
not paid for such as people who live together and help each other in various
ways but not paid for it? Also, roommate could be added to the list of payors
for services.
- The NHIS definition of a household may cause problems for this survey
if a group home is categorized as "separate households" since we will need to
know the overall composition and organization of the group home.
- Validity issues surrounding questions about characteristics of other
non-family residents. Can people report this and will people
report this?
*Items recommended as screening criteria.
Social Interaction and Behavior
Defined
- Frequency of social interaction
- Extent of interaction with nonhandicapped persons
- Use of community facilities
- Maladaptive/problem behaviors
Instrumentation
Frequency of Interaction/Past Week (Telephone or
In-Person 5+ Minutes) |
- With family members not living with sample member, friends not
living with sample member (excluding staff/counselors)
- More than twice a week
- Twice a week
- Once a week
|
Location of Interaction |
- Location:
- Sample member's residence
- Other person's residence public place
|
Interaction With Nondisabled People |
- Number of different friends sample member interacted with in
past week (excluding family and paid staff) who were not disabled
|
Community Activities/Past Month |
- Store/mall, restaurant, movies/play/concert, church/synagogue,
participated in sporting event, attended sporting event, party/dance/social,
museum/library
- Was activity group event: yes/no
- Was activity only/primarily people with handicaps: yes/no
|
In Mainstream School |
- See Employment/Educational Services Section
|
In Regular Job |
- See Employment/Educational Services Section
|
Problem Behaviors/Past Month (Age 6+) |
- Self injury, violence, threats, property damage, disruptive,
screams/yells/cries, temper trantrum, undressing, unacceptable sexual behavior,
lying/stealing, repetitive movements, repetitive speech, withdrawn,
uncooperative, restless, runs away
- never
- not past month
- 1-3 times/month
- 1-2 times/week
- 3-6 times/week
- 1-2 times/day
- 3-10 times/day
- 1+ times/hour
|
Problem Behavior (Prior to 6 Years) |
- National Maternal and Infant Health Survey questions:
- Independent to clinging
- Not demanding to demanding of attention
- Easy to difficult to manage
- Easy to difficult to discipline
- Not too frequent/long temper tantrums
- Usually happy to frequently miserable or irritable
- Not a worrier to very anxious about things
- Rarely to very fearful
- Few problems with siblings to serious difficulties with
siblings
- Gets along well with other children to very difficult jto
play with other children
|
Issues/Questions
- Avoid use of the term 'disturbance of mood"
- Should the quality of the interaction be measured as well as the
quantity of interactions? If so, how?
- There may be multiple causes or reasons why an individual displays
behaviors which are socially defined as problem behaviors, i.e. do others cause
the behavior?
- Should activities/interactions at work or school be included in the
list of "Community Activities/Use of Community Facilities"?
Informal Support
Defined
Emotional, financial, self-care, or general assistance provided by
family or friends:
- number of informal providers
- primary informal provider
- relationship of provider to individual
- types of services/assistance provided
- amount of assistance provided
Instrumentation
Number of Informal Providers |
- List all names (specify primary provider)
|
Relationship/Description of Provider to
Individual |
- Relationship to individual: parent, brother/sister (in-laws),
spouse, child, other relative, non-relative
- Gender: male/female
- Lives with sample member: yes/no
|
Non-Monetary Types of Service/Assistance |
- Personal care, housekeeping/house maintenance, meals,
medication/medical treatment, managing finances or legal matters, grocery/other
shopping, transportation, supervision
|
Amount of Assistance Provided |
- When: weekday days, evenings, during the nights, weekend days
- Hours per week (Monday-Friday), __________ (write-in)
- Hours per weekend, __________ (write-in)
|
Monetary Types of Services/Assistance Including
Purchasing Clothes/Groceries, etc. |
- Groceries, clothing, housing (rent, mortgage, utilities,
payments for personal care/housekeeping/other assistance, medicine/supplies,
treatment, cash, other
|
Amount of Expenses |
- Average for week or month $__________ (write-in)
|
Issues/Questions
- Instead of just questioning "tasks" which must be "accomplished"
should we also look at "activities" which one "does" such as recreation,
leisure, or hobbies?
- Is it better to measure the "pay" questions by asking about "shared
expenses" or "reimbursement for expenses"?
- Questions on informal support will be integrated into general
functioning/activity questions.
Demographic Characteristics
Defined
- Age
- Gender
- Race/ethnicity
- Marital status
- Family income
- Participation in public income/insurance programs
Instrumentation
NHIS Core |
- Age: date of birth
- Gender: interviewer observation
- Race/ethnicity
Race: Aleut/Eskimo/American Indian,
Asian/Pacific Islander, Black, White, Other __________ (specify) National
origin/ancestry: Puerto Rican, Cuban, Mexican/Mecicano, Mexican American,
Chicano,
- Other Latin American, Other Spanish
- Marital status: now married, widowed, divorced, separated,
never married
- Family income:
- More/less than $20,000
- More specific categories are determined through an exhibit
card
- Educational attainment: highest year completed
- Elementary (1-8)
- High School (9-12)
- College (1-6+)
|
Additional Questions on Program Participation (Based
Upon SIPP) |
|
Social Security |
- * Currently receiving
- Reason for receiving: retired, disabled, widowed/surviving
child, spouse/dependent child, other, don't know
- Other reason
- If disabled: age began receiving benefit
|
Supplemental Security Income |
- * Currently receiving
- Received SEPARATE SSI payment from state/local welfare office
as well
|
Medicare |
- Covered by Medicare (shown sample card)
- Claim number and coverage recorded from card
- Covered by optional feature for doctor bills
|
Medicaid |
- Currently receiving
- Record claim number
|
Food Stamps |
- Person or spouse in H.H. authorized to receive
- Covered under other person's allotment
|
Other Public Assistance |
- Received welfare such as AFDC, WIC, foster child care, or
general assistance
- Covered under other person's payment
- __________ (specify type of welfare)
|
Issues/Questions
- Poverty status will be determined from family composition and income
information.
*Items recommended as screening criteria.