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: http://aspe.hhs.gov/daltcp/reports/sumofrec.pdf (59 PDF pages)

This report was prepared under contract #HHS-100-88-0035 between the U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, Office of Social Services Policy (now known as the Office of Disability, Aging and Long-Term Care Policy) and Mathematica Policy Research, Inc. For additional information about this subject, you can visit the DALTCP home page at http://aspe.hhs.gov/_/office_specific/daltcp.cfm or contact the office at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C. 20201. The e-mail address is: webmaster.DALTCP@hhs.gov. The Project Officer was Robert Clark.

TABLE OF CONTENTS

OVERVIEW

ATTACHMENT A. COMPARISON OF RFP RESEARCH QUESTIONS WITH CORE/NON-CORE DATA CATEGORIES

ATTACHMENT B. OVERVIEW OF RECOMMENDED QUESTIONS

Overview of Screening Module

Attachment A. Definition of Developmental Disability in Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1987

Attachment B. Recommended List of Categorical Conditions to be Asked as Part of Screener

Categorical Conditions

Overriding Issues: Functional Status

Functional Status: Limitations in Self-Care

Functional Status: Limitations in Independent Living

Functional Status: Limitations in Self-Direction

Functional Status: Limitations in Receptive/Expressive Communication

Functional Status: Limitations in Mobility

Functional Status: Limitations in Economic Self-Sufficiency

Functional Status: Limitations in Learning

Employment and Educational Services

Adaptive Equipment/Assistive Devices

Medical and Health Services

Social and Psychological Services

In-Home Services

Transportation Services

Residential Environment

Social Interaction and Behavior

Informal Support

Demographic Characteristics

LIST OF FIGURES

FIGURE B-1: Screening on Categorical Conditions List

FIGURE B-2: Screening on Functional Limitations

FIGURE B-3: Screening on Use of Selected Services

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

ATTACHMENT B. OVERVIEW OF RECOMMENDED QUESTIONS

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 minimize 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.

ATTACHMENT A. DEFINITION OF DEVELOPMENTAL DISABILITY IN DEVELOPMENTAL DISABILITIES ASSISTANCE AND BILL OF RIGHTS ACT AMENDMENTS OF 1987

A severe, chronic condition which:

1. is attributable to a mental or physical impairment or a combination of mental or physical impairments;

2. is manifested before the person attains age twenty-two;

3. is likely to continue indefinitely;

4. results in substantial functional limitations in three or more of the following areas of major life activity:

   1. self care
   2. receptive and expressive language
   3. learning
   4. mobility
   5. self-direction
   6. capacity for independent living and
   7. economic self-sufficiency; and

5. 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.

ATTACHMENT B. RECOMMENDED LIST OF CATEGORICAL CONDITIONS TO BE ASKED AS PART OF SCREENER

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 B-1. Screening on Categorical Conditions List

NOTE: Recommended Categorical Conditions List Appended. Outstanding Issues: Conditions included on list Conditions used to identify follow-up sample Age of onset cutoff to identify follow-up sample

FIGURE B-2. Screening on Functional Limitations

Appropriate for all but very young children. Appropriate for older children and adults. Primarily appropriate for adults. * Attending special school/classes is covered under services.

FIGURE B-3. Screening on Use of Selected Services

Categorical Conditions¹

Defined

The underlying mental or physical health conditions) associated with the sample member's impairment(s)/functional limitations/disability.

Instrumentation

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?

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-Care²

Defined

Primarily the traditional activities of daily living:

• dressing
• continence
• eating
• bed/chair transfer
• bathing
• self-medicating
• toileting

Instrumentation

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.

Functional Status: Limitations in Independent Living²

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

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

Functional Status: Limitations in Self-Direction²

Defined

• Independence in selecting/arranging services and activities
• Ability to manage finances
• Ability to defind and/or advocate for oneself
• Need for supervision

Instrumentation

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

Functional Status: Limitations in Receptive/Expressive Communication²

Defined

Ability to engage in the communication of needs, attitudes, and ideas with others and to receive and provide imput in social interchange:

• mode
• adequacy

Instrumentation

Issues/Questions

• Two main types of impairments in receptive/expressive communication--physical (sensory, mechanical) and cognitive. Should this be more fully addressed?

Functional Status: Limitations in Mobility²

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

Issues/Questions

• Should mobility for people who are blind be explicitly addressed?

Functional Status: Limitations in Economic Self-Sufficiency²

Defined

The ability to work and maintain employment:

• vocational skills
• work habits
• job finding
• earning capacity/income adequacy

Instrumentation

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).

Functional Status: Limitations in Learning²

Defined

The ability to acquire new knowledge and skills and to apply one's experiences in new situations:

• cognition
• retention
• reasoning
• academic skills

Instrumentation

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.

Employment and Educational Services²

Defined

Jobs and job-support services as well as education and training:

Instrumentation

Issues/Questions

• Enclaves may not be distinguished from supported employment or regular employment.
• Job tenure is not measured.

Adaptive Equipment/Assistive Devices²

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

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.

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

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

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.

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

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

Residential Environment²

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

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?

Social Interaction and Behavior

Defined

• Frequency of social interaction
• Extent of interaction with nonhandicapped persons
• Use of community facilities
• Maladaptive/problem behaviors

Instrumentation

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

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

Additional Questions on Program Participation (Based Upon SIPP)

Issues/Questions

• Poverty status will be determined from family composition and income information.

NOTES

1. Items recommended as screening criteria. See Overview of Screen, Figure 1.

2. Items recommended as screening criteria.