Breaking Through the Glass Ceiling to Real Community Inclusion: How advocates, MCOs and providers can build and implement a shared vision for the future of community services for people with disabilities Barb Trader, Executive Director, TASH Gail Fanjoy, Executive Director, KFI Lisa Mills, Systems Change Consultant Merrill Friedman, Vice President of Advocacy, Amerigroup

What is TASH? Leader in Disability Advocacy since 1975 Values drive, Evidence-based Bringing Advocates, Researcher and Practitioners together in powerful partnerships Volunteer Supported Cross Disability, Cross Sector

What is TASH’s Vision? TASH has a vision of a world in which people with disabilities are fully participating members of their communities. We envision communities in which no one is segregated and everyone belongs. We envision a world where service providers focus first on facilitating community participation, employment and belonging

Today’s Session Why is authenticity in person-centered planning and supports critical for individuals with complex disabilities and support needs? Stories of waiver beneficiaries with extensive needs, including the planning process, the supports they receive, and their daily lives; Suggest action steps for providers and agencies to follow to expand the provision of authentic person- centered planning and supports to all people, including those with the most extensive support needs; and Describe how person-centered planning and supports intersect with Managed Care strategies.

Authenticity When Planning is Authentic Listening to and prioritizing the support recipient’s desires and dreams (spoken or unspoken) is fundamental “Readiness” is not a pre-requisite – people are READY! Planning for expanding: relationships, community involvement, choice and control, and valued/ contributing roles is essential Plans flex as people change When Supports are Authentic What’s desired is the driver Obstacles are tackled Supports are personalized and individualized Opportunities to expand choice, control and contribution are actively sought Compromise is an interim or last choice – not a first choice Unpaid relationships begin to exceed paid relationships Provider is not the community

Stories of People Supported by KFI Presented by: Gail Fanjoy, Executive Director, KFI 1024 Central St., Suite A Millinocket, ME

Providing personalized supports which enable people to:

Live in homes of their own… Flexible Own home or apartment With or without a roommate Home ownership if desired Focus on neighborhood and community connections Nurture natural supports

Individualized, competitive integrated employment Customized through Discovery Entrepreneurial Pathway to employment activities Job coaching and long term supports (Waiver funded or private pay) Work in regular community businesses…

Be members and contributors to their communities Individualized or interest- focused pairings Activity-focused small groups Focus on community connections Meaningful days Blended with the rest of the person’s life

Notes from a KFI Management Team Meeting on July 8, 1987: “The ideal program would use an individual formula to address vocational, personal, social, and recreational needs of each individual. Where do we begin?”

Five Questions that Guide the Development of a Dream How can we expand and deepen the person’s relationships? How can we increase the person’s presence in local community life? How can we help the person to have more choice and control in their life? How can we enhance the person’s reputation and increase the number of valued ways the person contributes to community life? How can we assist the person to develop more competencies? Based upon John O’Brien’s “Framework for Accomplishment”

WHOLE LIFE SUPPORTS

Dan, the Pioneer Behavioral challenges resulted in being kicked out of his 7 th foster home in approx. 11 years. 27 years old Never had spent any time without family or paid supports.

Today Dan has a full life which revolves around owning his own home 39 hours of paid supports/week; hot line to state crisis line; warm line to KFI staff working 24/7

Strategy: Helped Dan move into his own home; initially it was a rented room in a large home owned by the local taxi service. KFI changed the location of his supports from a day program to his own home/community; celebrated when we couldn’t keep track of who he knew, where he went, and what he did!

If a person had the right kind and amount of supports, would he/she need to go to a day program, work in a sheltered workshop, or live in a group home? How do we build those supports?

Marie’s Challenge to KFI 1991 Had been institutionalized since the age of 11. Lived in an ICF/ID nursing home for the last 10 or so years. Had been kicked out of her day program for people with challenging behaviors due to challenging behaviors. Was supported by one-to-one aides who worked in 4 hour shifts because her behaviors were so challenging. Was considered extremely self-abusive, failure to thrive, profoundly cognitively disabled. Was given a 30 day notice to leave the ICF/ID nursing home and was on her way to the state’s large institution for people with intellectual disabilities in the closing days of that institution.

Marie, circa1992

“Somebody has got to do something, and it’s incredibly pathetic that it has got to be us.” Jerry Garcia

Boating on one of Maine’s many lakes

There was only one paid person at Marie’s last person-centered planning event

Marie Lesson: – Supporting people – no matter the complexities of their disabilities – to live in their own home and giving them control, can produce miracles. Strategy: – “Treatment” took the form of real home, family connections, paying attention to what she showed us she wanted and needed, and less about her behavior and deficits.

Courtney Cyr Vending established in December donated high end vending machines placed in area businesses and establishments Amazing team which included KFI Customized Employment Coordinator, KFI Support Coordinator, 3 KFI DSP’s, VR Transition Councilor, Community Case Manager, Benefit Specialist, Maine Small Business Council representative, and most importantly, Courtney and her family

Profound cognitive impairment Autistic disorder Cerebral palsy Seizure disorder Static encephalopathy Ataxia with low tone Nonverbal Does not have self-protective reflexes No reliable communication system Courtney’s Labels

Community is relationships, places NOT places It is where no one goes “unmissed”

Inclusion is Possible When... “Same as rest of us” expectations prevail Supported decision-making replaces traditional approaches which take control away from the individual Provider committed to customized relationships and supports with each person they serve

Inclusion is Possible When... Provider does not substitute for community: – Provider is not landlord, employer, social circle, transportation provider – Needs met through community with provider supporting this to happen

“The bottom line of the social sector organization is ‘changed lives’.” Peter Drucker

Agencies that Have Changed 8 Agencies in 7 States California, Louisiana, Massachusetts, New Hampshire, New York, Washington, Wisconsin Changed from Group to Individualized models of support Kendrick, Michael. (2009) Some lessons concerning agency transformation towards personalised services. The International Journal of Leadership in Public Services, 5(1),

Lessons From Agencies that Have Changed For all 8 agencies: All support for all people became individualized; no group programs of any kind were maintained Individualization happened without external pressure Impetus for change was leadership embracing values-based decision-making Change happened one person at a time; agencies learned as they went Net costs to support people was within range of normative per capita costs

Lessons From Agencies that Have Changed All 8 agencies Had no guarantees that the change would be supported by funders – it was just the right thing to do and they believed demonstrating outcomes to funders would result in funders supporting the change Maintained a balanced budget throughout change process Remained fully compliant with system funder and requirements Were comparatively small; less than $14 MM

Lessons From Agencies that Have Changed All 8 agencies Respected and engaged families and natural supporters Served their share of very-difficult-to-serve people Had functional individual budgets in place Coexisted and thrived through political and economic changes Identified principal task as developmental/ ongoing in a person’s life

Changes Reported for People and Staff 73% reduction in incident reports 81% reduction in psychotropic medication Reduction in inpatient stays Fewer interventions by police and emergency services Overall improvement in health and well-being Improved staff morale/ lower turnover Reduction in worker’s compensation claims

Suggested Action Steps for Providers – From Research Consider the services your agency provides Should any services be standardized? Should any services be individualized? What would be gained by individualizing services- For the people you support? For their family members? For your agency? For the community?

Suggested Action Steps for Providers – From TASH Members Consider your values Are mission statement and values aligned? Are current practices and values aligned? Is change necessary? Find a mentor Train yourself and your staff Connect with like-minded agencies

“Just as important as the decision on what new and different things to do, is the planned systematic abandonment of the old that: No longer fits the purpose and mission of the business, No longer conveys satisfaction to the customer, No longer makes a superior contribution…” Peter Drucker

Some Fundamentals GET TRAINING Get as much information about innovative and emerging best practice: read journals, connect to websites, go to conferences. UNDERSTAND THE ART OF THE POSSIBLE Know that there is someone doing daily what others say cannot be done at all.

Some Fundamentals START WITH THE IDEAL AND COMPROMISE FROM THERE. DON’T START WITH COMPROMISE Define “ideal.” Our supports to people will never be perfect, but we can try to figure out what makes the most sense and set our sights on that. Be committed to working through obstacles. BE A GENTLE SALESPERSON Always keep the person’s desires on the agenda to allow you to advocate within the organization, to funders, to family and other providers.

Some Fundamentals STOP TRYING TO FIX PEOPLE People do not need to pass a test to receive meaningful supports. People are ready NOW for their own home and a real job - they do not need to earn it! Eliminate the continuum! ABANDON PROGRAMS IN FAVOR OF SUPPORTS “Nothing is less productive than to make more efficient what should not be done at all.” Peter Drucker

Some Fundamentals PROVIDE SUPPORTS IN THE PERSON’S COMMUNITY Don’t move the person to your community or the day program’s community. EMPOWER STAFF Create opportunities for staff to try new things. Give staff responsibility and authority. Reward and celebrate successes. DON’T BACKFILL When one person is out of the group, don’t accept another person into the program. You’ll never convert the program that way!

Join TASH! Barb Trader, Executive Director Become a Member Donations and Inquiries 1001 Connecticut Ave NW Suite 235 Washington, DC Main Info Line:

How can Managed Long-Term Services and Supports Facilitate these Practices? Fresh Start Flexibility – What can be paid for – Who can be paid – How payments can be made Feedback loop to TennCare

How Managed Care Changes Things Focus on outcomes expected from services Not fixing or maintaining people, but life outcomes that have meaningful, positive impact on a person’s quality of life Health promotion, wellness, prevention and support for innovative ways to improve and sustain health and mental health

How Managed Care Changes Things Cost effectiveness doesn’t always mean the cheapest option. Best return on investment is focus for managing limited funding Achieving cost efficiencies without congregation and segregation

Why Managed Care and Employment First Are Good Bedfellows Meaningful life change and outcomes – Employment as a Means to Many Ends...

Why Managed Care and Employment First Are Good Bedfellows Health benefits – Health and mental health benefits are clear

Why Managed Care and Employment First Are Good Bedfellows Other partners focused on same outcomes are numerous – Vocational Rehabilitation – School Transition Programs – Workforce System (One Stops/AJCs) – Community/Technical Colleges – Businesses

Why Managed Care and Employment First Are Good Bedfellows Natural supports: – Enhance people’s lives – Allow conservation of limited funding for paid supports; and – Are only available in integrated settings where people without disabilities (who are not staff) are present.

See the Opportunity in Change Managed Care is Unlikely To Cause the Sky to Fall With Visionary, Values-Led Providers as Partners, Managed Care can Break the Glass Ceiling to Full Inclusion