Supporting Families LifeCourseFramework Respite Across the ...

Supporting Families LifeCourse FrameworkRespite Across the Life Span

September 23, 2016

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Presentation Notes

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.


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.

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COP charged with developing a framework for supporting families Chose to model after the life course theory Informed by Wingspread-Building a National Agenda for Supporting Families with a member with IDD Framework started with Mo F2F stakeholders. Plain language, not systems jargon.

Setting the Stage

Current Reality of Service and Supports

Expectations, Values, Culture Federal Budget


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-DEMAND for services going UP, while BUDGET is going DOWN. Workforce – females between 25 and 45, going DOWN. Elderly using $ and people resources that IDD also uses. -Expectations of younger generation that has grown up with FULL iinclusion. -Policy – moving away from institutional and congregate settings, and employment and community inclusion is an expectation. -Providers expected to do MORE for less Key Federal Policy: Developmental Disability Act Individuals with Disabilities Education Act Family and Medical Leave Act Lifespan Respite Act Older American’s Act HCBS rules Key Federal Initiatives Medicaid Money Follows the Person SSA Ticket to Work Aging and Disability Resource Centers HHS Community Living Initiative Other Key Initiatives: National Governors Association initiative “A Better Bottom Line: Employing People with Disabilities”

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


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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Transitional change – can’t just keep changing names and adding things on – have to think very differently. The LifeCourse Framework is the way we can achieve Transformational Change Have/change conversations; problem solve; navigate; educate; plan Tools to give confidence, to start conversations, actually USE the tools

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.

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We don’t say ALL people “with disabilities” – but ALL PEOPLE. PWD are part of the ALL so we don’t need to single them out as different or special.

ALL People

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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3 out of 4 are not getting and may never get paid DD services. Our job is to help the 3 get other kinds of support, and help ALL 4 figure out different ways of getting supports.

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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P2P interacts both directions!!

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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No matter if person lives with their family (or not), talks to (or not) or if the family goes to meetings with the person We have to be OPEN to their definition of family!

Defining Supports to Families

DISCOVERY AND NAVIGATIONKnowledge & Skills

CONNECTINGAND NETWORKING

Mental Health & Self-Efficacy

GOODS AND SERVICESDay-to-Day

& Caregiving/Supports


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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What kinds of things did you say earlier for YOUR good life? PWD and families usually want those same types of things. Everybody “gets” what the good life is. We just don’t usually ask them! What kinds of things do you think PWD and families will say they DON’T want? Sometimes you need to start there – they may not know what they want (because they are thinking in disability world) but they almost always can tell you want they don’t. FAMILY should have a good life trajectory too. TRAJECTORY is the path that will either lead you toward the good life or toward things you don’t want. Think about throwing a football – the path that the ball takes on it’s way to the receiver is the trajectory. If you shoot an arrow, or a nerf gun – the path that the arrow follows is the trajectory. CAN START at ANY AGE!!!! Support coordinators, providers, DSP’s, VR counselors, teachers….. ALL have the power to impact someone’s trajectory, sometimes negatively, by their actions or words. We must be very careful and mindful of the impact we can have. Are we nudging person and family toward what they want or what they don’t want?? EACH interaction, think about which way it pointed their trajectory! KINDERGARTEN story – segregated class and safer special bus Trajectory isn’t always straight Bumps in the road – you can get back on track VISION and TRAJECTORY can be very broad or very specific and time limited. Might be what are we doing/what’s happening this wee

Partnering with People with Disabilities and their Families so they can Engage, Lead, and

Drive Policy and Systems Change


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How do we ensure people with disabilities and their families are involved in the process? How are they the voice of the change?

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First show the person, Then show the family, then bring up the domains And then the buckets And then the outer layers All these things work together to make a good life.

Integrated Starfor Problem Solving & Exploring Options

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HOW do we get the supports needed for the GOOD LIFE???

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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MAPPING PROBLEM SOLVING PLANNING LTSS PLANNING ACTIVITIES We ALL do this without even thinking about it

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


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


LifeCourse Star to Calendar

BEFORE: Services and Supports

Mom, Dad

DDD Self-Directed waiver PCA staff; Medicaid; Special

Needs Trust

Ben’s Services

& Supports


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


LifeCourseEducational Materials

LifeCourseTools

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TOOLS – might just use to take NOTES; eventually will guide your thinking and conversations. Person or family doesn’t have to fill out or even know you are using the tool. Can use very broadly or very specific to a need or situation.

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


Integrated Options Support Stars


ARCH Fact Sheet: Rural

http://archrespite.org/images/docs/Factsheets/State_Coalition_Fact_Sheets/FS_35-Rural_Respite.pdf

http://archrespite.org/images/docs/Factsheets/State_Coalition_Fact_Sheets/FS_35-Rural_Respite.pdf

ARCH Fact Sheet: Autism

file:///C:/Users/bartonkn/Desktop/FS_58_Autism_Respite.pdf

Integrated Supports Banks

LIFECOURSE PORTFOLIOS


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 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



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



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 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”



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 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


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

Presenter

Presentation Notes

So I started using the tools. I already knew off top what she didn’t want! Then, I talked to her about and plotted out what her good life looks like. Based on what she wanted in the top box, I made a list of demands. She can’t spend all day alone anymore. We have to get a medical alert device so she is not laying on the floor alone for hours waiting for someone to come and help anymore. We have to put together a financial action plan to protect her money from people who are preying on older people. We have to get her a new cell phone.

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.orglifecoursetools.orgmofamilytofamily.org

Contact Information

Jane St. John [email protected]

800-444-0821


mailto:[email protected]

Supporting Families LifeCourseFramework Respite Across the ...

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