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
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%)
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