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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