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Federal Lifespan Respite Program:

Data Elements – Definitions and Instructions

version August 19, 2022

Note on time periods: Most reported data elements should cover the course of the project 

period; this is defined as the first day of your current Federal Lifespan Respite Program grant 

through the last day of the reporting period. 

Section A: Federal Lifespan Respite Program Care Services Delivered

Item 1 – Federal Lifespan Respite Care delivered

For this item, report only on the respite care services, voucher funds, and other funds 

administered through your Federal Lifespan Respite grant for the purposes of providing respite. 

• Respite care—Planned or emergency care provided to a child or adult with a special need 

in order to provide temporary relief to the family caregiver of that child or adult. Respite 

care may be provided directly or through vouchers. In cases where traditional respite care 

is not available or desirable, respite may be provided through supplies or materials that 

help caregivers lessen the time or intensity of care.

• Hours of respite care delivered to date—The number of hours of respite care received by 

caregivers to date through the Federal Lifespan Respite program, reported in increments 

of 0.25 hours (i.e., 15 minutes). “Received” means that caregivers have utilized the 

respite. Overnight respite stays should also be counted by the number of hours. 

• Expenditures on respite care to date—Federal Lifespan Respite Program Funds spent on 

respite care delivered to or redeemed by respite care vouchers. 

Item 2 – Federal Lifespan Respite Care delivered via voucher

For grants that provide respite care ONLY through vouchers, numbers in Item 2 will match those 

in Item 1.

• Respite Voucher—Funds provided to caregivers by the Lifespan Respite program for the 

purpose of obtaining respite services. 

• Units of respite care delivered to date via redeemed vouchers—The number of hours of 

respite care services caregivers have used through redeemed Federal Lifespan Respite 

Program vouchers. Redeemed means that the caregiver has not only received the voucher 

but has also used it. Caregivers may have received more than one voucher. Partial hours 

of respite care may be combined to arrive at the total. Overnight respite stays paid for 

with Lifespan Respite Program vouchers should also be counted by the number of 

hours/units. One hour of respite care = one respite care unit. 
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• Expenditures to date on respite care via redeemed vouchers—Federal Lifespan Respite 

Program Funds spent on respite care vouchers that have been redeemed by caregivers. 

Item 3 – Sources of match for the Lifespan Respite Care Program 

• State government funds—Funds received from a state government agency. 

• Local/community government funds—Funds received from a county, city, or other local 

community government agency. 

• Foundation funds—Funds received from a private or nonprofit foundation. 

• In-kind sources—Nonmonetary sources of match, such as volunteer time, materials, or 

space. 

• Other funding source(s)—All other sources of funds for respite services. 

Item 4 – Location of Federal Lifespan Respite Care 

Individual caregivers may be counted only once per category. Caregivers who receive respite 

care in more than one location should be counted once for each applicable category. 

• In-home respite (day)—Planned services that are provided during the day and originate in 

the home of the care recipient, the caregiver, or another private home in which the care 

recipient is temporarily residing.

• In-home respite (overnight)—Planned services that are provided overnight and originate 

in the home of the care recipient, the caregiver, or another private home in which the care 

recipient is temporarily residing. 

• Out-of-Home respite (day)—Planned services that are provided during the day and 

originate outside of the location where the care recipient resides.

• Out-of-Home respite (overnight)—Planned services that are provided overnight and 

originate at a location outside of the place where the care recipient resides.

• Emergency respite—Unplanned respite care provided either in-home or out-of-home, 

during the day or overnight. 

• Respite care location missing—Includes missing data and respite care location not 

specified by participant. 

Item 5 – Total people served by the Federal Lifespan Respite Program Funds

Please report the number of unique (i.e., unduplicated) individuals served in each category over 

the course of the project period. 

• Total caregivers served through the Federal Lifespan Respite Program Services—The 

number of unique (i.e., unduplicated) caregivers who have received respite care services 

or training. Caregivers who received more than one type of service should be counted 

only once in this line. 
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• Caregivers who received respite care—The number of unique (i.e., unduplicated) 

caregivers who have received respite care services or respite vouchers through the 

Federal Lifespan Respite Program. 

• Caregivers who received training—The number of unique (i.e., unduplicated) caregivers 

who have fully completed training on the purposes and benefits of respite, how to obtain 

and manage respite care, how to plan for and use respite care, how to provide care to the 

care recipient, or how to care for oneself as a caregiver through the Federal Lifespan 

Respite Program. 

• Care recipients—The number of unique (i.e., unduplicated) children and adults for whom 

Federal Lifespan Respite Program caregivers (i.e., the total caregivers reported in the first 

line of this item) provided care. 

Section B: Federal Lifespan Respite Program – Caregiver Demographics

Please report the cumulative number of unduplicated persons served over the course of the 

project period. Totals for each item should add up to the same number of caregivers reported in 

Section A, Item 5, line 1 – Total caregivers served through Federal Lifespan Respite Program 

Services. 

Item 1 – Caregiver Age 

• 18-24 

• 25-39 years 

• 40-64 years 

• 65 years and over 

• Age missing—Includes missing data and age not specified or left blank by participant. 

Item 2 – Caregiver Gender Identity

Caregivers (or caregiver proxy) should be given the opportunity for self-identification. 

• Woman—A person who identifies as a woman, regardless of the sex assigned at birth. 

• Man—A person who identifies as a man, regardless of the sex assigned at birth. 

• Nonbinary/nonconforming—A person who does not identify solely as “woman” or 

“man.” 

• Other gender identity—A person who indicates a gender identity different than the 

options listed.

• Gender missing—Includes missing data, gender not specified, left blank by participant, or 

not collected by grantee.
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Item 3 – Caregiver Transgender 

• Transgender—A person whose current gender identity is different from the sex they were 

assigned at birth.

• Not transgender—A person whose current gender identity is the same as the sex they 

were assigned at birth

• Transgender missing—Includes missing data, transgender not specified, left blank by 

participant, or not collected by grantee 

Item 4 – Caregiver Sexual Orientation

Caregivers (or caregiver proxy) should be given the opportunity for self-identification. 

• Lesbian or gay—A person who identifies as homosexual and is sexually oriented toward 

people of the same, usually binary, gender. 

• Straight, that is, not gay or lesbian—A person who identifies as heterosexual and is 

sexually oriented toward people of a different, usually binary, gender. 

• Bisexual—A person who identifies as sexually oriented toward both men and women. 

• Other sexual orientation—A person indicates a sexual orientation different than the 

options listed.

• Sexual orientation not known by participant—A person indicates not knowing 

their/proxy’s sexual orientation (i.e., a response of “don’t know” when asked about one’s 

sexual orientation).

• Sexual orientation missing—Includes missing data, sexual orientation not specified, left 

blank by participant, or not collected by grantee. 

Item 5 – Caregiver Geographic Location

The geographic description of the area where the caregiver lives. Possible ways to collect this 

include: self (or proxy) report, or by collection of zip code and grantee using Rural-Urban 

Commuting Area (RUCA) codes1 to determine the appropriate category.

• Urban—Central places and adjacent densely settled territories with a combined minimum 

population of 50,000. 

• Suburban—A location with a population between 10,000 and 49,999. 

• Rural—Open country and settlements with population between 2,500 and 9,999.

• Frontier—Sparsely populated areas that are geographically isolated from population 

centers and services, with population less than 2,500. 

• Geographic location missing—Includes missing data and location not specified by 

participant. 

1 https://oaaps.acl.gov/Resources/rucaRes 
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Item 6 – Caregiver Ethnicity

• Hispanic or Latino—A person of Cuban, Mexican, Puerto Rican, South or Central 

American, or other Spanish culture or origin, regardless of race. The term “Spanish 

origin” can be used in addition to “Hispanic or Latino.” 

• Not Hispanic or Latino. 

• Ethnicity Missing—Includes missing data and ethnicity not specified by participant. 

Item 7 – Caregiver Race 

Respondents should be given the opportunity for self-identification and must be allowed to 

designate all categories that apply to them. Therefore, the total here may be greater than the total 

in Section A, Item 5, line 1. 

• American Indian or Alaska Native—A person having origins in any of the original 

peoples of North America (including Central America) and who maintains tribal 

affiliation or community attachment. 

• Asian or Asian American—A person having origins in any of the original peoples of the 

Far East, Southeast Asia, or the Indian subcontinent, including Cambodia, China, India, 

Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam. 

• Black or African American—A person having origins in any of the black racial groups of 

Africa. 

• Native Hawaiian or Other Pacific Islander—A person having origins in any of the 

original peoples of Hawaii, Guam, Samoa, or other Pacific Islands. 

• White—A person having origins in any of the peoples of Europe, the Middle East, or 

North Africa. 

• Race Missing—Includes missing data and race not specified by participant. 

Item 8 – Caregiver Relationship to Care Recipient 

Respondent should be allowed to self-identify the category that applies to their relationship. 

Caregiver indicates their role by selecting the term that applies to them.

• Adult child—Provides care to a parent. 

• Parent – Provides care to a minor or adult child. 

• Spouse or partner—Provides care to a spouse or partner. 

• Grandparent – Provides care to a grandchild. 

• Other kin caregiver—Provides care to a family member or relative not described in the 

categories above (e.g., aunt, uncle, cousin, sibling, daughter-in-law). 

• Other relationship—Provides care to a friend, neighbor, or another person who is not a 

relative. 
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• Relationship missing—Includes missing data and relationship not specified by 

participant. 

Section C: Federal Lifespan Respite Program - Care Recipient Demographics

Please report the cumulative number of unduplicated persons served over the course of the 

project period. Totals for each item should add up to the same number of caregivers reported in 

Section A, Item 5, line 5. 

Item 1 – Care Recipient Age

• Under 18 

• 18-24 years 

• 25-39 years 

• 40-64 years 

• 65 years and over 

• Age missing—Includes missing data and age not specified or left blank by participant. 

Item 2 – Care Recipient Gender Identity

Care recipient (or proxy) should be given the opportunity for self-identification. 

• Woman/girl—A person who identifies as a woman or girl, regardless of the sex assigned 

at birth.

• Man/boy—A person who identifies as a man or boy, regardless of the sex assigned at 

birth. 

• Nonbinary/nonconforming—A person who does not identify solely as “woman/girl” or 

“man/boy.” 

• Other gender identity—A person who indicates a gender identity different than the 

options listed.

• Gender missing—Includes missing data, gender not specified, left blank by participant, or 

not collected by the grantee.

Item 3 – Care Recipient Transgender for Care Recipients age 18 and older 

• Transgender—A person whose current gender identity is different from the sex they were 

assigned at birth.

• Not transgender—A person whose current gender identity matches the sex they were 

assigned at birth. 

• Transgender missing—Includes missing data, transgender not specified, left blank by 

participant, or not collected by the grantee. 
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Item 4 – Care Recipient Sexual Orientation for Care Recipients age 18 and older 

Care recipient (or care recipient proxy) should be given the opportunity for self-identification. 

• Lesbian or gay—A person who identifies as homosexual and is sexually oriented toward 

people of the same, usually binary, gender. 

• Straight, that is, not gay or lesbian—A person who identifies as heterosexual and is 

sexually oriented toward people of a different, usually binary, gender. 

• Bisexual—A person who identifies as sexually oriented toward both men and women.

• Other sexual orientation—A person who indicates a sexual orientation different than the 

options listed.

• Sexual orientation not known by participant—A person who indicates not knowing 

their/proxy’s sexual orientation (i.e., a response of “don’t know” when asked about one’s 

sexual orientation).

• Sexual orientation missing—Includes missing data, sexual orientation not specified by 

participant, left blank by participant, or not collected by the grantee.

Item 5 – Care Recipient Geographic Location

The geographic description of the area where the care recipient lives. Possible ways to collect 

this include self- or proxy report, or by collection of zip code and grantee using RUCA codes2

 to 

determine the appropriate category.

• Urban—Central places and adjacent densely settled territories with a combined minimum 

population of 50,000. 

• Suburban—A location with a population between 10,000 and 49,999. 

• Rural—Open country and settlements with population between 2,500 and 9,999.

• Frontier—Isolated, small rural areas with population less than 2,500. 

• Geographic location missing—Includes missing data and location not specified by 

participant. 

Item 6 – Care Recipient Ethnicity

• Hispanic or Latino—A person of Cuban, Mexican, Puerto Rican, South or Central 

American, or other Spanish culture or origin, regardless of race. The term “Spanish 

origin” can be used in addition to “Hispanic or Latino.” 

• Not Hispanic or Latino. 

• Ethnicity Missing—Includes missing data and ethnicity not specified by participant. 

2 https://oaaps.acl.gov/Resources/rucaRes 
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Item 7 – Care Recipient Race 

Respondents should be given the opportunity for self-identification and must be allowed to 

designate all categories that apply to them. Therefore, the total may be greater than the total in 

line 5, Section A, Item 5. 

• American Indian or Alaska Native—A person having origins in any of the original 

peoples of North America (including Central America) and who maintains tribal 

affiliation or community attachment. 

• Asian or Asian American—A person having origins in any of the original peoples of the 

Far East, Southeast Asia, or the Indian subcontinent, including Cambodia, China, India, 

Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam. 

• Black or African American—A person having origins in any of the black racial groups of 

Africa. 

• Native Hawaiian or Other Pacific Islander—A person having origins in any of the 

original peoples of Hawaii, Guam, Samoa, or other Pacific Islands. 

• White—A person having origins in any of the peoples of Europe, the Middle East, or 

North Africa. 

• Race Missing—Includes missing data and race not specified by participant. 

Section D: Federal Lifespan Respite Program - Respite Training

Item 1 – Hours of Respite Training Provided through the Federal Lifespan Respite 

Program grant 

Indicate the cumulative number of hours of training over the course of the project period. Enter 

“0” for none. 

• Hours of respite training provided through the Lifespan Respite grant to paid and 

volunteer respite providers, whether in person or online—The hours spent training each 

person count separately. The number of hours of training through the Federal Lifespan 

Respite program, reported in increments of 0.25 hours (i.e., 15 minutes). For example, a 

2-hour training for 5 participants counts as 10 hours of respite training. Trainer time 

(including trainer preparation time) is not counted. Count training hours only for 

attendees who fully complete a training.

• Hours of respite training provided through the Lifespan Respite grant to caregivers—The 

hours spent training each caregiver count separately. The number of hours of training 

through the Federal Lifespan Respite program, reported in increments of 0.25 hours (i.e., 

15 minutes). Training may cover the purposes and benefits of respite, how to obtain and 

manage respite care, how to plan for and use respite care, how to provide care to the care 

recipient, or how to care for oneself as a caregiver. Trainer time (including trainer 

preparation time) is not counted. Count training hours only for attendees who fully

complete a training.
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Section E: Awareness

Item 1 – Respite Program Website and Registry for your State 

• Respite program website or webpage—A webpage, website, or other online presence 

dedicated to providing information on respite services and resources. 

• Registry of respite providers—A comprehensive list of active respite care providers, 

including individuals and organizations, across the state. 

Item 2 – Access to/Awareness of Respite Program Website and Registry for Your State 

Indicate the cumulative number of unique visitors over the course of the project period. Enter “0” 

for none or “n/a” if your state does not have a website or registry available to caregivers.

• Total respite program website visitors—The number of visits to the respite website or 

main webpage; this number may include more than one visit by the same person. 

• Total respite registry webpage visitors—The number of visits to the main registry 

webpage; this number may include more than one visit by the same person. Please count 

only the primary page that includes registry listings; do not include all affiliated pages.

Item 3 – Outreach Activities to Build Respite Program Awareness Across the Lifespan

Indicate which outreach activities your Lifespan Respite program has engaged in over the course 

of the project period. 

• Hosted respite conference(s)—Conferences focused on respite and hosted by the state 

Lifespan Respite program or jointly sponsored and organized by the state Lifespan 

Respite program. A conference commonly involves multiple presentations available to 

attendees. 

• Community presentations—Presentations focused on respite hosted by the state Lifespan 

Respite program or jointly by the state Lifespan Respite Program and another partner. A 

community presentation is typically 30 to 120 minutes in length. 

• Social media posts—Social media posts created and posted that are dedicated to 

promoting the Lifespan Respite program or services. 

• Radio advertisements—Radio advertisements created and aired that are dedicated to 

promoting the Lifespan Respite program or services. 

• TV advertisements—TV advertisements created and aired that are dedicated to promoting 

the Lifespan Respite program or services. 

• Newspaper advertisements—Newspaper advertisements created and published that are 

dedicated to promoting the Lifespan Respite program or services.

• PSAs—Public service announcements created and aired that are dedicated to promoting 

the Lifespan Respite program or services. 
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• e-Newsletters—A newsletter distributed electronically that includes information on the 

Lifespan Respite program or services. 

Item 4 – Number of e-newsletter subscribers

• Subscribers—Individuals who regularly receive an e-newsletter that includes information 

on the Lifespan Respite program or services. 

Section F: Lifespan Respite Program System and Providers

Item 1 – Lifespan Respite Program Coalition Meetings 

Indicate the cumulative number of meetings over the course of the project period. Enter “0” for 

none.

• Lifespan Respite Coalition or organization—A group of individuals and 

organizations/organizational representatives that convenes regularly, whether in-person 

or through telecommunications, to discuss, promote, and advance Lifespan Respite 

services, training, and system enhancement. 

• Lifespan Respite coalition or organization meetings—Convening of coalition meetings 

in-person, via web or telecommunications. Meetings may include discussion of outreach, 

service provision, sustainability, funding, and enhanced coordination and partnership 

amongst community organizations and providers. Count only those meetings to which all 

coalition members are invited; subgroup or workgroup meetings are not included. 

Item 2 – Lifespan Respite Coalition Members

Indicate the current number as of the final date of the reporting period. Enter “0” for none.

• Individual Lifespan Respite coalition members—Individuals who are included in 

coalition communications and meetings and who participate in a regular or meaningful 

way. Do not count people who are representing an organization or agency. This may 

include respite consumers, subject matter experts, or others.

• Organizational Lifespan Respite coalition members—Organizations with one or more 

representatives who are included in coalition communications and meetings and who 

participate in a regular or meaningful way. 

Item 3 – Lifespan Respite Providers

Indicate the current number of respite providers as of the final date of the reporting period. Enter 

“0” for none. 

• Number of organizations providing respite in the state—Number of organizations 

actively providing respite services to the community. Organizations should be counted 

once. Include all organizational providers of respite services in the state, whether funded 

by Lifespan Respite or other sources. Providers may be public, nonprofit, or for profit.