Transcript Effective Individual Advocacy in the Adult System

Effective Individual Advocacy
in the ADULT System
August 2011
Presented by: Lana Hurt,
Regional Coordinator
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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 is
having 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
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Good Decisions Matter
“….Providers of human services
affect 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’Brien
http://thechp.syr.edu/whatsw.pdf
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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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Be Alert To The Culture:
For every complex problem
there is a simple solution and it is
wrong.
--Oscar Wilde
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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
 Medicaid
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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 Choice
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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 Assisted
Money Follows The Person (MFP)
HOSPITAL
 AIDS
 Technology Assisted
ICF/MR
Intellectual Disabilities/Mental
Retardation

Developmental Disabilities
 Day Support
Money Follows The Person (MFP)
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Accessing Providers
 The case manager can
provide you with a list of
qualified providers for each
service in the plan
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You have the right to
choose providers
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You have the right to visit,
interview and research
providers
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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
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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
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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 Supports
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