Effective Individual Advocacy in the ADULT System August 2011 Presented by: Lana Hurt,
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Transcript of Effective Individual Advocacy in the ADULT System August 2011 Presented by: Lana Hurt,
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Effective Individual Advocacy
in the ADULT System
August 2011Presented by: Lana Hurt,
Regional Coordinator
Overview Introductions
Self Advocacy / Individual Advocacy /System
advocacy
Distinctions between children & adult services
Understand the culture
Understand the menu – specific models
Recommendations
Questions & Answers
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Premises
The only disability ishaving no relationships
- Judith Snow
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Self- Advocacy – the Individual’s pursuit of his or her own needs and choices
Individual Advocacy- efforts by another person to ensure an individual is supported according to the person’s needs/preferences
Systems Advocacy – One or more persons engaged in efforts to improve or change the system or quality of life for all people
Good Decisions Matter
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“….Providers of human servicesaffect the daily experiences & future prospects of the people, families, and communities who rely on them.
Their policies and daily practice influence…
• Where a person lives, learns, works, and plays• What activities fill the person’s days• Who the person gets to know and
• Where the person belongs
Services shape people's experience of community life”
From “What’s Worth Working For – Leadership For Better Quality Human Services” by John O’Brienhttp://thechp.syr.edu/whatsw.pdf
Role of the Individual Advocate Understand the options
Know /represent the person Focus on the “Big Picture” : goals, values,
safety guidelines Communicate “non-negotiables” in
advance
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Distinctions between Children and Adult Systems
CHILDREN: Lack decision-making capacity
Educational Services are mandated (IDEA)
Educational Services are adequately funded
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Distinctions between Children and Adult Systems
ADULTS:• Capacity is presumed
• Adult services are not mandated • When/if ICF/MRs close – no more
entitlements • Availability based on eligibility, funding
& willingness• Poorly funded
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Distinctions between Children and Adult Systems
Decision-making is truly shared Good collaboration skills are
important:Listen, be direct, respect time constraints, understand the system
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For every complex problemthere is a simple solution and it is
wrong. --Oscar Wilde
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Be Alert To The Culture:
What Does A Person-Centered Organizational Culture Look Like?
Flexibility is possible Vision / values are clear People closest to the person/problem are able to
speak up and be heard Relationships are open, respectful Learning happens – because changes are noticed
and observed AND acknowledged People stay connected in learning/thinking
together through ongoing dialogue.
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What Does A PC Organization NOT Look
like:Passive / Blame Culture
“Professionals know best” “Those are the rules” CYA versus real
accountability to the person Creativity is weird / risky /
not acceptable
Crisis Culture Only time for “quick fixes” Temporary solutions
become permanent – until there is another crisis
Time to think is a luxury Crisis management replaces
real accountability to the person
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What Helps – When You’re In Between?
Vision : Leaders see through the “lens” of helping people get the lives that THEY want.
Trust Problem solving – requires release
of people’s creativity, not formulaic implementation processes.
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Person-Centered Principles
John O’Brien and Connie Lyle Community presence: Sharing ordinary places that define
community life. Choice: Autonomy both in small, everyday matters (e.g.,
what to eat or what to wear) and in large, life-defining matters (e.g., with whom to live or what sort of work to do).
Competence: the opportunity to perform functional and meaningful activities with whatever assistance is required.
Respect: a valued place among a network of people and valued roles in community life.
Community participation: the experience of being part of a network of personal relationships that include close friends.
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Rules of Trust Trust is not blind
– You can only trust people you know– Trust requires “face time”– You can only know a finite number of people well
enough to trust– Be willing to work together with people in a “chain of
trust”– Trust requires boundaries– Trust requires learning and communicating – AND
having the capacity/support to act on new learning.
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What Helps When resources are scarce - negative
symptoms can surface Strategies that exceed (or are more ambitious)
than the resources available , will fail. Sometimes we need to settle for the “least evil”
solution while we are working for change – and letting others know this.
Consistent, incremental changes help.
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Typical Family Concerns: Initially, trust – Is the person safe?
How can this be verified? Involvement – Will regular visits be
supported? Communication – How will I know if
the service plan we agree on is happening?
Behavior Supports – If my loved one has behavioral issues, will he/she end up in jail?
Other?
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Rules Of The Road!
Providers of Licensed Services Work With
Three Sets of Regulations
Human rights
Licensing
Medicaid18
Not All Agencies Are Alike
Typical Family Concerns Trust / Safety
Visits / Involvement
Communication
Behavior Supports
Transfers
Related System Regulations
Licensure / Human Rights guidelines/ contacts Allies within the agency?
Visits impact provider income / about 14 out of service days a year is the norm.
In general – the smaller the “paid circle,” the more responsive. Unless leadership is exceptional
Regional variations. 911 is a potential. Be proactive!
VNPP-Protocol For Choice19
Human Rights System
First & foremost: safety and the right to therapeutic treatment-The delicate balance between what is important to
the person and what is important for the person. ALL complaints must be reported – many
avenues for complaint Restrictions must be approved by LHRCs Clients have rights. Providers have
rights. Human Rights Advocates are
responsive to calls of concern.
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Licensing Regulations Medication guidelines
Providers are mandated reporters. Providers have been advised by LHRCs to report family members who ignore doctor’s orders .
Environmental standards High standards for operational records Unannounced visits – Licensure
Specialists are receptive to calls of concern
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Medicaid – the tax payer is the primary
stakeholder
Average daily billing and the 90 day guideline on billable activities
General supervision is not billable Medicaid audits can be very costly
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We’ve Come a Long Way?
Old Perspective: People with disabilities are defective and must be segregated until “fixed.”
New Perspective: Disability is a natural part of human experience. Environments / attitudes must be “fixed.” We are all interdependent. Learning is the glue.
Current service options scale from segregated to fully inclusive
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Different Institutions – Different Waivers
NURSING HOMES AIDS Alzheimer’s Elderly or Disabled with Consumer Direction (ED/CD Technology AssistedMoney Follows The Person (MFP)
HOSPITAL AIDS Technology Assisted
ICF/MR Intellectual Disabilities/Mental Retardation
Developmental Disabilities Day SupportMoney Follows The Person (MFP)
Accessing Providers
The case manager can provide you with a list of qualified providers for each service in the plan
You have the right to choose providers
You have the right to visit, interview and research providers
You decide when, where and how you want approved services provided
Case Manager will assist you in locating and choosing providers
Case Managers will contact providers for initiation of services
You can switch providers if you choose
There are shortages of some providers
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Different Services – Different Rates
Medicaid makes a critical distinction between
assistance and training
Reimbursement rates for services -
http://www.dmas.virginia.gov/ltc-home.htm
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Pros & Cons of In-Home Services
Good things Very person-centered Allows people to remain
with their families Reimbursement rates are
higher than the assistance level service
Bad things: Providers who offer this
service are limited Hours may be limited, often
coupled with respite and/or attendant care
Turn-over rate can be high Families are the “back-up”
plan
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Group Homes versus Sponsored Placements
Traditional Group Homes Staff do not live in the home
Staff work in shifts Direct care work under supervisors. Direct care staff are underpaid
Providers - well compensated. Supervision is imposed/external Subject to audit by DMAS, DBHDS &
Human Rights Typically 4 to 8 clients Typically agency directed
Often detachment is required
Sponsored Residential Placements Staff live in the home Staff share lives Direct Care staff are service owners Providers - well compensated. Supervisors are partners/facilitators Subject to audit by DMAS,
DBHDS & Human Rights Typically person-centered w/active
involvement of natural families Typically 1 to 2 clients Therapeutic relationship is central
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Bonding versus Bridging
Bonding – the skills around being in warm and therapeutic relationship with a person
Bridging – the skills around supporting a person to have friends of his/her own, to have a community presence, to have a meaningful life beyond the service world
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Pros & Cons of Sponsored Residential Services
The upside Very person-centered Very flexible / responsive to
learning Very close communication
with Guardians / Authorized Representatives
The downside Transfers can be very hard Transfers can be sudden Good succession planning is
important – and this is not a regulatory requirement.
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No Risk-Free Options
...the truth is, things don't really get solved.
They come together & they fall apart. It's just like that.
The healing comes from letting there be room for all of this to happen: grief, relief, misery and joy...
-Pema Chodron
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What Can Parents Do To Help??
History matters : Gather evaluations / medical history / medication
history Develop Communication Charts Use Relationship Maps What are the dreams?
Start with the end in mind What are positive rituals? What makes a good day?
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What Can Parents Do To Help?
Be open to new ideas View the community as “landscape”
for day support? Have a vision that fits the person’s needs/preferences.
Consider funding private therapies? Stay in collaborative relationship Try not to put the cart
(agency/model) ahead of the horse (focus on the person).
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Person-Centered Plans –Use the Tools of the Trade!
• Part 1 - Essential Information • Part 2 - Personal Profile , What’s Working or Not
Working in 8 areas;
• Part 3 - Shared Planning / Outcomes based on
Important TO / Important FOR values as agreed by
team members at the annual meeting.
• Part 4 - Agreements (signatures)
• Part 5 - Support Plans (ISPs) from each
provider, including the CSB
• Appendix - Risk Assessment / Safety Supports34