A Process model for NYS Family Support:
Documentation, Out-comes,
Empowerment & Support
Nancy Craig,
cocfnlc@omh.state.ny.us/716-432-6238
New York State Office of Mental Health
Parent Advisor Western Region
April 15, 2010
The Quest:
Unify 16 unique and very individual Family Support
programs within western NYS
To demonstrate using quantitative and qualitative
data that parents & caregivers connected with
Family Support experience improved knowledge
and skills in meeting the challenges of raising a
child with mental health issues.
Challenges
• Family Support is not a clinical program
• Family Support is about Parents & Caregivers
Strengths and Needs not an identified child’s
Strengths and Needs
• Process to collect and document information
must be user friendly
• Measurement tool must have validity
From Concept
• Keep focus on Hope, Empowerment and Future
• Parents & caregivers have a clear understanding
of their individual Strengths and Needs
• Self-identified parent & caregiver driven goals
• Fidelity to NYS Family Support Program model
To Operation
• Assessment (FANS)
• Documentation (Journey)
• Out-comes (FANS)
• Empowerment
• Demographics (we are not totally there yet)
One Tool - - - Many Uses
6
Outcome-Engineering:
A model for decision support and documentation for
NYS Family Support.
Journey mapping web application consists of:
Modules for each Family Support Program
Web-based Interface for each family support staff to enter:
1) qualitative data about each interaction they have with
parent & caregiver- ‘Journey Mapping’; 2) FANS Scale; 3)
Parent Empowerment Scale
System tracks individual parent & caregiver using a unique
identifier without including descriptive data;
Includes Reports that can be used by Supervisors and staff to
track and monitor progress
Includes Reports that can be use to monitor program statistics.
7
Development of Needs and Strengths
Assessment tool specific to the work of
Family Support (FANS)
• Reviewed New Jersey, Kids Oneida, &
other existing CANS tools
• Gathered ONLY questions that
referenced parent & caregiver
• Started with 30 parent & caregiver
specific questions
• Cross walked with NYS program model
which consists of: Advocacy& Support,
Education & Skill Development, and
Support Groups and Respite
8
The NY Family Support-FANS tool
• 15 questions embedded within the data
collection process
• Scale is similar to the Child and
Adolescent CANS-MH tool
• Content reflects Caregiver Needs and
Strengths areas with modified questions
that reflect areas that family support
addresses.
9
Method:
Sample:
• 682 FANS were collected from 444 parent &
caregivers who received family support in
Western NY
• The majority of FANS were collected
between November 2007 to August 2008
Analysis:
• The frequency of ‘Needs’ on each item was
calculated from the first FANS collected
from these 444 parents & caregivers (Needs
=score of 2 or 3 on each FANS item)
10
Method (cnt’d)
Analysis:
Outcomes - Pre and post scores were
compared for 193 parents & caregivers
that had at least 2 FANS
– Needs Met was calculated as movement from
needs (2 or 3) to strengths (0 or 1) on each item
– A comparison of the difference between the
post and pre scores were used to indicate if a
parent & caregiver was doing better, stayed
the same or got worse on each item.
11
KNOWLEDGE OF FAMILY / CHILD NEEDS:
Check
0
Caregiver has strong understanding of family and child
needs.
1
Caregiver has understanding of family and child needs
but may still require some help in learning about
certain aspects of these needs.
2
Caregiver requires assistance in understanding family
and or child needs.
3
Caregiver requires substantial assistance in identifying
and understanding family and child needs.
12
KNOWLEDGE OF RIGHTS AND
RESPONSIBILITIES:
Check
Caregiver has strong understanding or rights and
responsibilities.
Caregiver has understanding or rights and
responsibilities but may still require some help
learning about certain aspects.
Caregiver requires assistance in understanding
rights and responsibilities.
Caregiver requires substantial assistance in
identifying and understanding rights and
responsibilities.
13
KNOWLEDGE OF SERVICE OPTIONS: this item refers to the choices
the family might have for specific treatment interventions or other services that might help the family address
their needs or the needs of one of the family’s members.
Check
0
Caregiver has strong understanding of service options.
1
Caregiver has understanding of service options but
still may require help in learning about certain aspects
of the service.
2
Caregiver requires assistance in understanding service
options.
3
Caregiver requires substantial assistance in identifying
and understanding service options.
14
SATIFACTION WITH YOUTH’S LIVING
ARRANGEMENT:
Check
0
1
2
3
Caregiver is pleased with identified youth’s current
living arrangement.
Caregiver is satisfied with identified youth’s current
living arrangement, although some improvements
could be made.
Caregiver believes a change in living arrangement is
required.
Caregiver believes an immediate change in living
arrangement is required.
15
SATIFACTION WITH YOUTH’S EDUCATIONAL
ARRANGEMENT:
Check
0
Caregiver is pleased with identified youth’s current
educational arrangement.
1
Caregiver is satisfied with youth’s current educational
arrangement, although some improvements could be
made.
2
Caregiver believes a change in educational
arrangement is desirable.
3
Caregiver believes an immediate change in educational
arrangement is required.
16
SATISFACTION WITH SCHOOL PARTICIPATION:
Check
0
School works closely with caregiver to identify and
successfully address educational needs OR child excels
in school.
1
School works closely with caregiver to identify and
address educational needs OR child likes school.
2
School currently is unable to adequately address
educational needs.
3
School is unable to work to identify and address
educational needs.
17
SATISFACTION WITH CURRENT SERVICES BEING
PROVIDED
Check
0
Caregiver is pleased with current services
1
Caregiver is satisfied with current services, although
some improvements could be made.
2
Caregiver believes a significant change in services is
desirable.
3
Caregiver believes an immediate and significant
change in services is required.
18
Advocacy:
Frequency of Needs (n=444)
50
40
% 30
20
10
0
Needs
Knowledge of Family/Child Needs
Knowledge of Rights and Responsibilities
Knowledge of Service Options
Satisfaction with Youth's Living Arrangement
Satisfaction with Youth's Educational Arrangement
Satisfaction with School Participation
Satisfaction with Current Services Being Provided
19
Advocacy:
Outcomes (n=193)
Better
Same
Worse
80%
70%
60%
50%
40%
30%
20%
10%
0%
Knowledge
Needs
Knowledge
Rigths
Knowledge
Service
Youth Living
Situation
Youth
Education
School
Participation
Current
Services
20
CAREGIVERS ABILITY TO LISTEN:
Check
0
Caregiver is able to listen carefully and understand both
good and bad news regarding family / child(ren) issues
1
Caregiver has listening skills but sometimes struggles to
hear either good or bad news regarding family child(ren)
issues
Caregiver requires help learning to listen effectively
2
3
Caregiver requires substantial help learning to listen
effectively.
21
CAREGIVERS ABILITY TO COMMUNICATE:
Check
0
1
2
3
Caregiver is able to express feeling and thoughts
effectively with regard to family & child issues. Others
hear, understand, and respond.
Caregiver is able to express feelings and thoughts but
sometimes struggle to express these so that others can
listen and or understand.
Caregiver requires help learning to express feelings and
thoughts effectively with regard to family and or child
issues.
Caregiver requires substantial help to express feelings and
thoughts effectively with regard to family and child issues.
22
CAREGIVERS ORGANIZATION SKILLS:
Check
0
Caregiver is well organized and efficient.
1
Caregiver has minimal difficulties with organizing and
maintaining household to support needed services.
For example, may be forgetful about appointments or
occasionally fails to return phone calls.
2
Caregiver has moderate difficulty organizing and
maintaining household to support needed services.
Caregiver is unable to organize household to support
needed services.
3
23
Education and Skill Development:
Frequency of Needs (n=444)
%
35
30
25
20
15
10
5
0
Needs
Caregivers Ability to Listen
Caregivers Ability to Communicate
Caregivers Organization Skills
24
Education and Skill Development:
Outcomes (n=193)
Better
Same
Worse
80%
70%
60%
50%
40%
30%
20%
10%
0%
Caregivers Ability
to Listen
Caregivers Ability
Caregivers
to Communicate Organization Skills
25
CAREGIVERS’ TALENTS AND INTERESTS:
Check
0
Caregiver has a talent or interest, or hobby that
provides personal enjoyment
1
Caregiver has a talent, interest, or hobby with the
potential to provide personal enjoyment
2
Caregiver has identified interests, but needs assistance
converting those interests into a talent or hobby.
3
Caregiver has no identified talents, interests, or
hobbies.
CAREGIVERS’ RECREATIONAL INTERESTS:
Check
0
1
2
3
Caregiver has and enjoys positive recreation activities
on an on-going basis
Caregiver is doing adequately with recreational
activities although some problems exist.
Caregiver is having moderate problems with
recreational activities. Caregiver may experience some
problems accessing.
Caregiver has no access to or interest in recreational
activities
CAREGIVER SOCIAL RESOURCES: Social resources refer to help
that you do not have to pay for. This could include friends, families or church
or other organizations that help the family in times of need.
Check
0
Caregiver has significant family and friend social network
that actively helps caregiver and their family
1
Caregiver has some family or friend social resources that
actively helps caregiver and their family
2
Caregiver has some family or friend social network that
may be able to help caregiver and their family
3
Caregiver has no family or social network that may be
able to help caregiver and their family
Support Groups and Respite:
Frequency of Needs (n=444)
50
40
% 30
20
10
0
Needs
Caregivers' Talents and Interests
Caregivers' Recreational Interests
Caregiver Social Resources
29
Support Group & Respite:
Outcomes (n=193)
Better
Same
Worse
80%
70%
60%
50%
40%
30%
20%
10%
0%
Caregivers'
Talents and
Interests
Caregivers'
Recreational
Interests
Caregiver Social
Resources
30
Frequency of Needs on Caregiver
Optimism & Involvement (n=444)
50
40
30
20
10
0
Needs
Caregiver Optimism
Caregiver Involvement
31
CAREGIVER OPTIMISM:
Check
0
Caregiver has a strong and stable optimistic outlook about
their life.
1
Caregiver is generally optimistic
2
Caregiver has some difficulties maintaining a positive view
of their self and their life. Caregiver may vary from overly
optimistic to overly pessimistic.
3
Caregiver has difficulties seeing any positives about
themselves or their life.
CAREGIVER INVOLVEMENT:
Check
0
Caregiver is able to act as an effective advocate for their child
1
Caregiver has a history of seeking help for their child(ren).
Caregiver is open to receiving support, education, and
information.
2
Caregiver doesn’t wish to participate in services and or
interventions intended to assist their child(ren)
3
Caregiver wishes for child(ren) to be removed from their care.
Caregiver Optimism and
Involvement: Outcomes (n=193)
Better
Same
Worse
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Caregiver Optimism
Caregiver Involvement
34
Discussion: Dispelling a Myth
Parent & Caregiver optimism
Parent & Caregiver involvement
and
• 45% of parents & caregivers scored this
question a two or three.
– And yet only
• 5% of parents & caregivers scored this
question as a two or three.
– Parents & Caregivers are committed to
keeping their child at home, even when
faced with a high degree of hopelessness
35
Results: FANS
Top Four NEEDS at Top Four NEEDS
Admission:
Met:
Top Four areas
Where parents &
caregivers are
STRONGER:
Social resources
(46%)
Social resources
(15%)
Knowledge of
Service options (26%)
Optimism (45%)
Optimism (13%)
Talents and interests
(25%)
Recreational interests Knowledge of service Knowledge of rights
(42%)
options (13%)
and responsibilities
(25%)
Knowledge of service Satisfaction with
options (38%)
youth’s education
(12%)
Social resources
(25%)
36
Conclusions:
FANS results indicate high levels of parent & caregiver needs in the
areas of expertise and FS successfully targeted the areas of greatest
need identified by parents and caregivers
37
Empowerment Scale
Learn: inquiry, Use: alone or with an advocate,
Teach: share with another
Peer Support and Advocacy
When faced with a problem the parent / caregiver
takes the initiative to identify resources and resolve
challenges.
Parent has a safety plan they can implement and
use.
Parent feels they have a voice in improving services
and reducing mental health stigma in their
community.
Learn
Use
Teach
Empowerment Scale cont.
Education & Skill Development
Parent focuses on strengths as well as needs
Parent can get information to better understand needs of
child and family.
Parent takes steps to learn new ways to meet their
individual goals
Learn Use Teach
Empowerment Scale cont.
Respite/Support Group
Respite (formal and informal) is utilized as a form of
stress management.
Parent develops natural and community resources and
accesses as needed.
Parent knows what steps to take when concerned that
services are not meeting their needs.
Learn Use Teach
Documentation: The Journey
3 basic questions
• Strength and Needs of Parent / Caregiver
• Parent / Caregiver Goals
– This should be reflected from the parent /
caregiver and FANS questions scoring 2 or 3
• What did you (advocate) do, give, refer to
meet the parent / caregiver goals
– What is your (advocate) role in this parent /
caregivers life
Lessons Learned:
What parents and caregivers are saying about the FANS
Keeps everyone focused on Strengths &
goals
Better understanding of the systems
Decreases the sense of feeling
overwhelmed and operating from crisis
mode all the time
Greater confidence in ability
Know how to make changes
42
Moving Forward:
Outcome-Engineering in Western Region provided the demonstration
that this model is ready to be disseminated statewide
• Continue mining the data
• Continue to refine process at Advocate level
• Continue modifications of platform for better and
more detailed data understanding
• Continue support for stakeholders utilizing the data
in a transparent fashion to move child and family
systems
• Continue linkage and training with Parent
Empowerment Project for uniformity of Advocate
skills leading to better focus parent & caregiver
outcomes.
43
Partners & Acknowledgements:
New York State Office of Mental Health
Dr. Kimberly Hoagwood: Parent
Empowerment Project, Family Advocate
Training “Parents as Change Agents”
Dr. Berry Kibel: Outcome-Engineering,
Journey Mapping
Dr. John Lyons: Child and Adolescent
Needs and Strengths tool, Family Support
FANS
44