Supporting Families LifeCourse Framework Respite 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 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
National Community of Practice on Supporting Families 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. Project Goal To 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. 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
Setting the Stage
Current Reality of Service and Supports Expectations, Values, Culture Federal Budget 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
Services and Supports are Evolving Everyone exists within the context of family and community Traditional Disability Services Integrated Services and Supports within context of person, family and community 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
Type of Change that is Needed TRANSITIONAL CHANGE TRANSFORMATION CHANGE Retooling the system and its practices to fit the new model Mergers, consolidations, reorganizations, revising systematic payment structures, creating new services, processes, systems and products to replace the traditional one Fundamental reordering of thinking, beliefs, culture, relationships, and behavior Turns assumptions inside out and disrupts familiar rituals and structures Rejects command and control relationships in favor of cocreative partnerships Creating Blue Space, Hanns Meissner, 2013 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
GUIDING PRINCIPLES FOR THE SUPPORTING FAMILIES LIFECOURSE FRAMEWORK
Core Belief: All people and their families have the right to live, love, work, play and pursue their life aspirations in their community.
ALL People
1 in 4 Persons with I/DD Receive Formal State DD Services 100% 75% 25% 4.7 Million people with developmental disabilities National % Receiving State DD Services ** Based on national definition of developmental disability with a prevalence rate of 1.49% 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
Focusing on ALL at MCH All 14.6 Million children with special health care needs 78% 22% National % Receiving Title V Services Child and Adolescent Health Measurement Initiative (2013). Who Are Children with Special Health Care Needs (CSHCN)
Jasper County People with Developmental Disabilities 1,857 estimated Jasper Countians with Developmental Disabilities 65% (1,207)??% State DD Services Targeted Case Management Based on 1.58% prevalence of 3.815 million citizens, US??%?% ICF/DD Enrolled HCBS DD Services
ALL: Public Health Framework Hand Washing Anti-Bacterial Soap Flu Shot Medical System 2015 UMKC Institute for Human Development, UCEDD SUPPORTSTOFAMILIES.ORG
Constructing Universal Strategies for Supporting Individuals with Disabilities and Families Across the LifeCourse Long Term Services and Supports Accessed by all citizens: Faith based communities Parks and Recreation Businesses Emergency Personnel 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 2015 UMKC Institute for Human Development, UCEDD SUPPORTSTOFAMILIES.ORG
Family Cycle Impacts Member Life Cycle Family Life Experience Impacts Trajectory 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 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
Defining Supports to Families DISCOVERY AND NAVIGATION Knowledge & Skills CONNECTING AND NETWORKING Mental Health & Self-Efficacy GOODS AND SERVICES Day-to-Day & Caregiving/Supports 2016 UMKC Institute for Human Development, UCEDD SUPPORTSTOFAMILIES.ORG
Trajectory towards Good Life Good Life VISION Friends, family, enough money, job I like, home, faith, vacations, health, choice, freedom Vision of What I Don t Want 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
Partnering with People with Disabilities and their Families so they can Engage, Lead, and Drive Policy and Systems Change 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
Integrated Star for Problem Solving & Exploring Options
LifeCourse Integrated Supports STAR i-pad/smart phone apps, remote monitoring, cognitive accessibility, Adaptive equipment resources, skills, abilities characteristics family, friends, neighbors, coworkers, church members, community members 100% school, businesses, church faith based, parks & rec, public transportation 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM SHS services, Special Ed, Medicaid, Voc Rehab, Food Stamps, Section 8 R
Focusing ONLY on Eligibility Supports Friends, family, enough money, job I like, home, faith, vacations, health, choice, freedom Eligibility Support s Poverty, loneliness, segregation, restrictions, lack of choice, boredom, institutions 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
Relying ONLY on Family & Friends Friends, family, enough money, job I like, home, faith, vacations, health, choice, freedom Relationships Poverty, loneliness, segregation, restrictions, lack of choice, boredom, institutions 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
LifeCourse Star to Calendar
BEFORE: Services and Supports Ben s Services & Supports Mom, Dad DDD Self-Directed waiver PCA staff; Medicaid; Special Needs Trust 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
AFTER: Services and Supports i-pad when home alone; digital watch Able to stay home alone for up to an hour; has & can use i-pad; Ben s Services & 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 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
LifeCourse Tools LifeCourse Educational Materials Lifecoursetools.com 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
LIFECOURSE RESOURCES: DEVELOPMENT PROCESS Gather Information Develop LifeCourse Resources 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 (CONT D) Gather Information Develop LifeCourse Resources Stakeholder Input Revise Make Resource Available 3. & 4. Stakeholder Input & Revise Review & revise drafted resource based on input from stakeholders Pilot-test resources 5. Make Resource Available Training Broad dissemination
Sheli Reynolds, Jane St. John, Rachel Hiles, Kelli Barton University of Missouri Kansas City Institute for Human Development (UMKC IHD) Jill Kagan Director ARCH National Respite Network and Resource Center Advisory Committee MaryJo Alimena Caruso Ivy Goldstein Doris Green Linda Irizarry Annette Offord Amy Korstvedt Nazaire Miriam Rose Janice Sparks Ashley Stevens Nadine Walter
Project Objectives Phase 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/partners Phase III: Broad dissemination
Focus on. Life stages 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
Integrated Options Support Stars 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
ARCH Fact Sheet: Rural http://archrespite.org/images/docs/factsheets/state_co alition_fact_sheets/fs_35-rural_respite.pdf
ARCH Fact Sheet: Autism file:///c:/users/bartonkn/desktop/fs_58_autis m_respite.pdf
Integrated Supports Banks
LIFECOURSE PORTFOLIOS 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
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? Respite Portfolio 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?
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. 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 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.
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? 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. 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 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. 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?
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. Caregiver s Overall Good Life Vision
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. 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 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. Vision for Good Respite
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. 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 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. 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 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 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. 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? 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)
Life Domain & subtopic guides 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM
Live in a nursing home Be alone Sick, go to hospital Financial problems Personal drama & stress Barbara s Trajectory Vision for a Good Life 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 What I DON T Want
Before the hospital (as of May 2015) After the hospital (September 2015 through February 2016)
NOW
Ways to Learn More: -Webinars -CoP Listserv -Website Links supportstofamilies.org lifecoursetools.org mofamilytofamily.org
Contact Information Jane St. John stjohnj@umkc.edu 800-444-0821 2016 UMKC Institute for Human Development, UCEDD LIFECOURSETOOLS.COM