Consumer-Directed Support: Impact of Hiring Practice on Adults with I/DD and Families

Tamar Heller, Katie Arnold, Lieke van Heumen Elizabeth McBride, & Alan Factor

Growing Older with a DisabilityToronto, June 6, 2011

Rehabilitation Research and Training Center on Aging with Developmental Disabilities: Lifespan Health and Function

Department of Disability and Human DevelopmentUniversity of Illinois at ChicagoWebsite: www.rrtcadd.org

theller@uic.edu

Consumer Directed ServicesMost adults with I/DD in US live with familiesGrowth of funding for those living at home or independentlyGrowing movement of consumer directed supportsThe National Core Indicators indicate that over 45% of family caregivers make less than $25,000. 53% of these are age 55-74 and 10% are over 75. Most states allow families to be paid, including parents

Results of RRTC research on Consumer Directed Services

Increased community participation and employment for people with I/DD (Caldwell & Heller, 2007)

Decreased institutional placements (Heller & Caldwell, 2006)

Less unmet needs, out-of-pocket expenses for disability services, and stress and burden for families (Caldwell & Heller, 2003; Heller, Miller, & Hsieh, 1999)

Among lower income families, better caregiver mental health and self-determination of people with I/DD (Caldwell & Heller, 2003)

AimExamine differential experiences and outcomes for adults with I/DD and family caregivers who receive services based on type of personal support worker (PSW) hired

Parents, siblings, other family, friends, and agency staff

MethodologySurvey of families receiving Home Based Support Services (adult Medicaid waiver)

Survey of family experience with personal assistance services National Core Indicators Family Survey

Interviews with adults with I/DD

MeasuresWorkforce characteristicsCaregiver Self-efficacy in managing PSWsSatisfaction with PSWCaregiving Appraisal (satisfaction, burden, self-efficacy)Mental health and Physical healthCommunity Participation of adult with I/DDDaily Choice Making of adults with I/DD

Study ParticipantsN=522 families (27% response rate) in the Illinois Adult Home Based Support Services ProgramAnalysis includes 369 families who hired PSWs

Demographics of Caregivers (N=369)

Mean age: 58, range from 21-8482% female 60% married58% employed Relationship to person with I/DD:

Parent (91%), sibling (8%), other family member (3%)

Characteristics of Person with I/DDMean age 31 from 18-6958% males, 42% females72% White, 27% MinorityLevel of ID: mild (14%), moderate (33%), severe (22%), profound (12%), don’t know (14%)

Who Did They Hire?

Parent 170Sibling 52Other Family 42Friends 56Agency staff 49

Age of Person with I/DD

PSW Hired0

5

10

15

20

25

30

35

40

ParentSiblingOther FamilyFriendsAgency Staff A

ge o

f Per

son

with

I/D

D

Years

Caregiver Martial Status

PSW Hired0

10

20

30

40

50

60

70

ParentSiblingOther FamilyFriendsAgency Staff

Perc

ent M

arri

ed%

Description of PSW ServicesMean hours weekly =27Mean number of PSWs in past year=2Mean number of PSWs who stopped working=.30Mean number of months with same PSW=74.75

Hours Weekly

PSW Hired0

5

10

15

20

25

30

35

ParentSiblingOther FamilyFriendsAgency Staff

Paid

sup

port

hou

rs p

er w

eek

Hours

Number of PSWs in Past Year

PSW Hired0

0.5

1

1.5

2

2.5

ParentSiblingOther FamilyFriendsAgency Staff

Num

ber o

f pai

d PS

Ws

in p

ast y

ear

PSWs Turnover

PSW Hired0

0.1

0.2

0.3

0.4

0.5

0.6

ParentSiblingOther FamilyFriendsAgency Staff

Num

ber o

f PSW

’s w

ho s

topp

ed w

orki

ng in

th

e pa

st y

ear

Time with Same PSW

PSW Hired0

20

40

60

80

100

120

ParentSiblingOther FamilyFriendsAgency Staff

Num

ber o

f Mon

ths

with

this

PSW

Results for CaregiverSatisfaction with PSW

Highest satisfaction with family members with siblings being the highestLowest for agency staff

Self-efficacy with managing PSWHighest with siblingsLowest for agency staff

Mental healthHighest with siblingsLowest for agency staff

Satisfaction with PSW

PSW Hired1

1.5

2

2.5

3

3.5

4

4.5

5

ParentSiblingOther FamilyFriendsAgency StaffSa

tisfa

ction

with

PSW

Mean

Self-efficacy in Managing PSW

PSW Hired1

1.5

2

2.5

3

3.5

4

4.5

5

ParentSiblingOther FamilyFriendsAgency Staff

Self-

effi

cacy

rega

rdin

g PS

W

Mean

Caregiver Mental Health

PSW Hired1

1.5

2

2.5

3

3.5

4

ParentSiblingOther FamilyFriendsAgency Staff

Men

tal H

ealth

of C

areg

iver

Results for Person with I/DD Physical Health

Highest with siblingLowest with friends

Daily ChoiceHighest with agency staff Lowest for friends and parents

Physical Health Person with I/DD

PSW Hired1

1.2

1.4

1.6

1.8

2

2.2

2.4

2.6

2.8

3

ParentSiblingOther FamilyFriendsAgency Staff

Phys

ical

Hea

lth o

f Per

son

with

I/D

D

Daily Choice of Person with I/DD

PSW Hired1

1.2

1.4

1.6

1.8

2

2.2

2.4

2.6

2.8

3

ParentSiblingOther FamilyFriendsAgency Staff

Choi

ce m

akin

g of

per

son

with

I/D

D

What Families Say:“I never had any luck at hiring a PSW so I just continue on caring for my son myself; no one will take better care of him than me.”

It enables me to stay home and provide the help my son needs. If I didn’t receive this money I would have to work outside the home and my son would probably have to live in a group home.”

“I feel good about my older son getting paid to help with my younger son, I would rather have family whom I know…. and I don’t have to worry about mistreatment.”

“Since we hired our own-it gives us more flexibility with hours-when we used an agency, hours were very limited and workers were very transient.”

Outcomes for People with I/DD (n=53 interviews)

Only significant differences in employment status—less satisfaction with employment status if parents were PSWCurrently expanding sample

Future Research

Training Intervention to help persons with I/DD and families better direct their supports with following goals:

Involvement of both the family and person with I/DD in planning and setting goalsHigher satisfaction with PA servicesGreater community participation and choice making of person with I/DDAttainment of goals set by persons with I/DD and their families

Future Research

Training Intervention to help persons with I/DD and families better direct their supports with following goals:

Involvement of both the family and person with I/DD in planning and setting goalsHigher satisfaction with PA servicesGreater community participation and choice making of person with I/DDAttainment of goals set by persons with I/DD and their families