Supporting Families LifeCourse FrameworkRespite Across the Life Span
September 23, 2016
About Jane• Mom of 3 sons, one with
a developmental disability• Partners in Policymaking
Graduate• Community Inclusion and
Field Research Specialist• National Community of
Practice on Supporting Families Staff
• Missouri Family-to-Family HIC staff
• Coordinator of activities focusing on supported decision making
Outcomes for Today
• Quick overview of the Supporting Families LifeCourse Framework and National Community of Practice
• Applying the LifeCourse Framework to Respite across the life span and across all abilities
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NationalCommunity of
Practice on Supporting
Families
Project GoalTo build capacity through a community of practice across and within States to create policies, practices and systems to better assist and support families that include a member with I/DD across the lifespan.
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Project Outcome• State and national consensus on a national
framework and agenda for improving support for families with members with I/DD.
• Enhanced national and state policies, practices, and sustainable systems that result in improved supports to families.
• Enhanced capacity of states to replicate and sustain exemplary practices to support families and systems.
Current Reality of Service and Supports
Expectations, Values, Culture Federal Budget
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Services and Supports are Evolving
Everyone exists within the context
of family and community
TraditionalDisability Services
Integrated Services and Supports within context of person,
family and community
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Type of Change that is NeededTRANSITIONAL CHANGE
“Retooling” the system and its practices to fit the new modelMergers, consolidations, reorganizations, revising systematic payment structures, creating new services, processes, systems and products to replace the traditional one
TRANSFORMATION CHANGE
Fundamental reordering of thinking, beliefs, culture, relationships, and behaviorTurns assumptions inside out and disrupts familiar rituals and structuresRejects command and control relationships in favor of co-creative partnerships
Creating Blue Space, Hanns Meissner, 2013
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Core Belief: All people and their
families have the right to live, love, work, play and pursue their life aspirations in their
community.
100%4.7 Million
people with developmental
disabilities
** Based on national definition of developmental disability with a prevalence rate of 1.49%
75%
National % Receiving State
DD Services
25%
1 in 4 Persons with I/DD Receive Formal State DD Services
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Focusing on ALL at MCH
22%78%
National % Receiving Title V Services
All 14.6 Million children with special health care needs
Child and Adolescent Health Measurement Initiative (2013). “Who Are Children with Special Health Care Needs (CSHCN)
Jasper County Peoplewith Developmental Disabilities
??%65%(1,207)
Enrolled HCBS DD Services
State DD Services
Targeted Case Management
??%
Based on 1.58% prevalence of 3.815 million citizens, US Census
1,857 estimated Jasper Countians with Developmental Disabilities ?%
ICF/DD
ALL: Public Health Framework
Medical System
Flu Shot
Hand WashingAnti-Bacterial Soap
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Constructing Universal Strategies for Supporting Individuals with Disabilities and
Families Across the LifeCourse
Long Term Services and
Supports
• Family and Self-Advocacy Networks• Aging and Disability Resource Centers• No Wrong Door Initiatives • Area Agencies on Aging• Parent Training Info Centers for Education• United Way 211
Accessed by all citizens:• Faith based communities• Parks and Recreation• Businesses• Emergency Personnel
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Family Life Experience Impacts TrajectoryFamily Cycle Impacts Member Life
Cycle
Reciprocal Roles of ALL Family Members
Person within Context of Family
ALL Individuals Exist within the Context of Family
• Family is defined by the individual• Individuals and their family may
need supports that adjust as roles and needs of all members change
• Not dependent upon where the person lives
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Defining Supports to Families
DISCOVERY AND NAVIGATIONKnowledge & Skills
CONNECTINGAND NETWORKING
Mental Health & Self-Efficacy
GOODS AND SERVICESDay-to-Day
& Caregiving/Supports
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Trajectory towards Good LifeGood Life
VISIONFriends, family, enough money, job I like, home, faith, vacations, health, choice,
freedom
Vision of What I Don’t Want
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Partnering with People with Disabilities and their Families so they can Engage, Lead, and
Drive Policy and Systems Change
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Integrated Starfor Problem Solving & Exploring Options
i-pad/smart phone apps, remote monitoring, cognitive accessibility, Adaptiveequipment
family, friends, neighbors, co-
workers, church members,
community members
school, businesses, church faith based, parks & rec, public transportation
SHS services, Special Ed, Medicaid, Voc
Rehab, Food Stamps, Section 8
R
resources, skills, abilities characteristics
LifeCourse Integrated Supports STAR
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Friends, family, enough money, job I like, home, faith, vacations, health, choice,
freedom
Poverty, loneliness, segregation,
restrictions, lack of choice, boredom,
institutions
Focusing ONLY on Eligibility Supports
Eligibility Support
s
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Friends, family, enough money, job I like, home, faith, vacations, health, choice,
freedom
Relying ONLY on Family & Friends
Relationships
Poverty, loneliness, segregation,
restrictions, lack of choice, boredom,
institutions
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BEFORE: Services and Supports
Mom, Dad
DDD Self-Directed waiver PCA staff; Medicaid; Special
Needs Trust
Ben’s Services
& Supports
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i-pad when home alone; digital watch
Able to stay home alone for up to an hour; has &
can use i-pad;
AFTER: Services and Supports
Mom, Dad, Matt, Zac, Ali, Chad, Ericka, Roy, Carol, Nick, Spohn,
Firemen at ESFD; coaches & staff at ES high school; Omni bus;
DDD Self-Directed waiver PCA staff; Medicaid; Special
Needs Trust
Ben’s Services
& Supports
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LifeCourseEducational Materials
LifeCourseTools
Lifecoursetools.com© 2 0 1 6 | U M K C I n s t i t u t e f o r H u m a n D e v e l o p m e n t , U C E D D | L I F E C O U R S E T O O L S . C O M
Gather Information
Develop LifeCourseResources
Stakeholder Input Revise
Make Resource Available
1. Gather Information• Engage stakeholders (webinars & homework)• Review literature & existing resources (e.g. ARCH fact sheets)2. Develop LifeCourse Tools / Resources • Based on review of literature & input of stakeholders
LIFECOURSE RESOURCES: DEVELOPMENT PROCESS
Gather Information
Develop LifeCourseResources
Stakeholder Input Revise
Make Resource Available
3. & 4. Stakeholder Input & Revise• Review & revise drafted resource based on input from stakeholders• Pilot-test resources5. Make Resource Available• Training• Broad dissemination
LIFECOURSE RESOURCES: DEVELOPMENT PROCESS (CONT’D)
Sheli Reynolds, Jane St. John, Rachel Hiles, Kelli BartonUniversity of Missouri Kansas City Institute for Human Development (UMKC IHD)
Jill KaganDirectorARCH National Respite Network and Resource Center
MaryJo AlimenaCarusoIvy GoldsteinDoris Green
Linda Irizarry Annette OffordAmy KorstvedtNazaire
Miriam RoseJanice SparksAshley StevensNadine Walter
Advisory Committee
Project ObjectivesPhase I: Develop resources/tools to build the capacity of Lifespan Respite grantees and partners to assist families and caregivers in identifying and utilizing integrated services and supports for respite• Based on the LifeCourse framework & tools• Guided by content (respite) experts: Advisory Committee
• Feedback on the development of LifeCourse Respite specific training tools
• Identify specific implementation, dissemination and scaling up strategies
Phase II: Training for State Lifespan Respite grantees/partnersPhase III: Broad dissemination
Focus on…. Life stages
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Integrated Options Support Stars
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ARCH Fact Sheet: Rural
http://archrespite.org/images/docs/Factsheets/State_Coalition_Fact_Sheets/FS_35-Rural_Respite.pdf
LIFECOURSE PORTFOLIOS
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Respite Portfolio
What is happening in your (the caregiver’s) life that might be causing stress or necessitate the need for a break?
Would taking a short break relieve stress; improve mental health of both; keep the caregiver from losing their job; improve the relationship?
Places I’d like to go;things I’d like to do; activities I’ve been missing.
Are there friends or family I’d like to reconnect with? Would I like to make new friends?
What supports would need to be in place for the care recipient? Are there any unique circumstances or needs
that should be addressed?
Positive Past
Experiences
Reflect on past experiences that helped you (the caregiver) feel comfortable taking a break, resulted in a positive respite result, or situations where the care recipient was successfully supported by someone other than the caregiver. Write those experiences in this box.
Negative Past
Experiences
Reflect on past experiences that helped you (the caregiver) feel comfortable taking a break, resulted in a positive respite result, or situations where the care recipient was successfully supported by someone other than the caregiver. Write those experiences in this box.
Reflect on past experiences that made you (the caregiver) feel uneasy about taking a break, or resulted in a stressful situation for the caregiver or was a bad experience for the care recipient, and list in this box.
Ideas for Making Respite Happen
Reflect on past experiences that helped you (the caregiver) feel comfortable taking a break, resulted in a positive respite result, or situations where the care recipient was successfully supported by someone other than the caregiver. Write those experiences in this box.
Reflect on past experiences that made you (the caregiver) feel uneasy about taking a break, or resulted in a stressful situation for the caregiver or was a bad experience for the care recipient, and list in this box.
Considering what both the caregiver and recipient envision for a “good life” and “NOT good life”, what a good or not good respite or short break would look like, and past experiences related to caregiver breaks, what will it take for you (the caregiver) to feel confident and comfortable taking a short break?
Barriers
Reflect on past experiences that helped you (the caregiver) feel comfortable taking a break, resulted in a positive respite result, or situations where the care recipient was successfully supported by someone other than the caregiver. Write those experiences in this box.
Reflect on past experiences that made you (the caregiver) feel uneasy about taking a break, or resulted in a stressful situation for the caregiver or was a bad experience for the care recipient, and list in this box.
Considering what both the caregiver and recipient envision for a “good life” and “NOT good life”, what a good or not good respite or short break would look like, and past experiences related to caregiver breaks, what will it take for you (the caregiver) to feel confident and comfortable taking a short break?
Consider and list any potential barriers to a caregiver break or successful respite experience. What would prevent you (the caregiver) from taking or enjoying a short break?
Caregiver’s Overall
Good Life Vision
List what you (the caregiver) consider a good life. What needs to be present or happening to make a good life (long or short term)? Many people say things like friends, family, fun, good job, or having enough money to do the things you like.
Care Recipient’s
Overall Good Life
Vision
List what you (the caregiver) consider a good life. What needs to be present or happening to make a good life (long or short term)? Many people say things like friends, family, fun, good job, or having enough money to do the things you like.
List things that make a good life for the care recipient. What makes them happy, puts a smile on their face, or motivates them? It could be something as simple as a soft blanket or a favorite food. If possible, ask the person to tell you what a good life is for them.
Vision for “Good
Respite”
List what you (the caregiver) consider a good life. What needs to be present or happening to make a good life (long or short term)? Many people say things like friends, family, fun, good job, or having enough money to do the things you like.
List things that make a good life for the care recipient. What makes them happy, puts a smile on their face, or motivates them? It could be something as simple as a soft blanket or a favorite food. If possible, ask the person to tell you what a good life is for them.
What would a good “short break” look like for both the care recipient and caregiver. What needs to be happening or in place so both of you can relax and enjoy a short break?
List what you (the caregiver) consider a good life. What needs to be present or happening to make a good life (long or short term)? Many people say things like friends, family, fun, good job, or having enough money to do the things you like.
List things that make a good life for the care recipient. What makes them happy, puts a smile on their face, or motivates them? It could be something as simple as a soft blanket or a favorite food. If possible, ask the person to tell you what a good life is for them.
What would a good “short break” look like for both the care recipient and caregiver. What needs to be happening or in place so both of you can relax and enjoy a short break?
What would make your life not so good? What do you want to avoid or prevent? Typical answers might include things like poverty, loneliness, pain or poor health. (*note, sometimes it’s easier to start here)
List what you (the caregiver) consider a good life. What needs to be present or happening to make a good life (long or short term)? Many people say things like friends, family, fun, good job, or having enough money to do the things you like.
List things that make a good life for the care recipient. What makes them happy, puts a smile on their face, or motivates them? It could be something as simple as a soft blanket or a favorite food. If possible, ask the person to tell you what a good life is for them.
What would a good “short break” look like for both the care recipient and caregiver. What needs to be happening or in place so both of you can relax and enjoy a short break?
What would make your life not so good? What do you want to avoid or prevent? Typical answers might include things like poverty, loneliness, pain or poor health. (*note, sometimes it’s easier to start here)
What are the experiences or outcomes that would make the care recipient’s life not good? What are things they don’t want or prefer to avoid? If possible, ask them to tell you what a “not good” life is for them.
List what you (the caregiver) consider a good life. What needs to be present or happening to make a good life (long or short term)? Many people say things like friends, family, fun, good job, or having enough money to do the things you like.
List things that make a good life for the care recipient. What makes them happy, puts a smile on their face, or motivates them? It could be something as simple as a soft blanket or a favorite food. If possible, ask the person to tell you what a good life is for them.
What would a good “short break” look like for both the care recipient and caregiver. What needs to be happening or in place so both of you can relax and enjoy a short break?
What would make your life not so good? What do you want to avoid or prevent? Typical answers might include things like poverty, loneliness, pain or poor health. (*note, sometimes it’s easier to start here)
What are the experiences or outcomes that would make the care recipient’s life not good? What are things they don’t want or prefer to avoid? If possible, ask them to tell you what a “not good” life is for them.
What would make respite or a short break not a good experience for the caregiver?
Life Domain & subtopic guides
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Barbara’s Trajectory
Vision for a Good Life
What I DON’T Want
• Live in a nursing home
• Be alone• Sick, go to hospital• Financial problems• Personal drama &
stress
• Live in my own home• Go to church and get
out in the community• Spend time with
granddaughter• Country and gospel
music• Gardening and
flowers• Crossword puzzles,
game shows, and soap operas
Ways to Learn More:-Webinars-CoP Listserv-Website Links
supportstofamilies.orglifecoursetools.orgmofamilytofamily.org
Contact Information
Jane St. John [email protected]
800-444-0821
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