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RETHINKING RETHINKING GUARDIANSHIPGUARDIANSHIP

DOHN HOYLEDOHN HOYLEELLEN SUGRUE ELLEN SUGRUE

HYMANHYMAN

1325 S. Washington Ave1325 S. Washington AveLansing, MI. 48910Lansing, MI. 48910

(517) 487-5426(517) 487-5426

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IF WE ARE IF WE ARE ABOUT ABOUT

EQUAL EQUAL OPPORTUNITYOPPORTUNITY

INCLUSIONINCLUSIONEQUITYEQUITYCHOICE CHOICE

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IF WE SEEK IF WE SEEK

SOCIAL JUSTICESOCIAL JUSTICE

ANDAND

THIS IS A THIS IS A

CIVIL RIGHTSCIVIL RIGHTS

STRUGGLESTRUGGLE

ThenThen

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HOW CAN WEHOW CAN WECOUNTENANCECOUNTENANCEAND EVEN BEAND EVEN BECOMPLICITECOMPLICITEIN THE SYSTEMATICIN THE SYSTEMATICGOVERNMENTALLYGOVERNMENTALLYSANCTIONEDSANCTIONEDSTRIPPING OFSTRIPPING OFINDIVIDUAL RIGHTSINDIVIDUAL RIGHTSTHROUGHTHROUGHGUARDIANSHIPGUARDIANSHIP

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Summary Summary StatementStatement

Every person can make choices and Every person can make choices and has a right to make decisions. has a right to make decisions. People who have a cognitive or People who have a cognitive or

intellectual disability may express intellectual disability may express those choices/decisions in non-those choices/decisions in non-

traditional ways. Any legal system traditional ways. Any legal system or proceeding which deprives an or proceeding which deprives an individual of her/his right to be individual of her/his right to be

accommodated and supported in accommodated and supported in choosing and making decisions choosing and making decisions and which appoints a substitute and which appoints a substitute decision-maker based on tests of decision-maker based on tests of competence, makes that person competence, makes that person vulnerable and deprives him/her vulnerable and deprives him/her not only of his/her right to self-not only of his/her right to self-determination but also of other determination but also of other

rights which should be rights which should be inalienable.inalienable.

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The following is an adaptation of the “Statement of The following is an adaptation of the “Statement of Principles” by the Coalition on Alternatives to Principles” by the Coalition on Alternatives to

Guardianship”.Guardianship”.

STATEMENT OF PRINCIPLESSTATEMENT OF PRINCIPLES

SUMMARY STATEMENTSUMMARY STATEMENT

Every person can make choices and has a right to make Every person can make choices and has a right to make decisions. People who have a cognitive or intellectual decisions. People who have a cognitive or intellectual disability may express those choices/decisions in non-disability may express those choices/decisions in non-traditional ways. Any legal system or proceeding which traditional ways. Any legal system or proceeding which deprives an individual of her/his right to be deprives an individual of her/his right to be accommodated and supported in choosing and making accommodated and supported in choosing and making decisions and which appoints a substitute decision-decisions and which appoints a substitute decision-maker based on tests of competence, makes that person maker based on tests of competence, makes that person vulnerable and deprives him/her not only of his/her vulnerable and deprives him/her not only of his/her right to self-determination but also of other rights right to self-determination but also of other rights which should be inalienable.which should be inalienable.

PRINCIPLESPRINCIPLES1.1. Each individual can choose and make decisions about Each individual can choose and make decisions about

his/her lifehis/her life

2.2. Each individual has the right to make decisions (self-Each individual has the right to make decisions (self-determination)determination)

3.3. Individuals may want help fro other persons of their Individuals may want help fro other persons of their choosing with choosing with whom they have trusting relationships, including family whom they have trusting relationships, including family members or friends, to make decisions or have them members or friends, to make decisions or have them interpreted, and to communicate them to others. This interpreted, and to communicate them to others. This is called supported decision making.is called supported decision making.

4.4. Individuals who have an intellectual disability may Individuals who have an intellectual disability may communicate choices, whishes, likes and dislikes in communicate choices, whishes, likes and dislikes in non-traditional ways which can include actions rather non-traditional ways which can include actions rather than language. Friends, family members, or others than language. Friends, family members, or others who are trusted by the individual, can help to interpret who are trusted by the individual, can help to interpret these decisions.these decisions.

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5.5. This natural interdependence of people must be This natural interdependence of people must be recognized and supported decisions that are made recognized and supported decisions that are made within such trusted, supportive relationships must be within such trusted, supportive relationships must be given status and validation.given status and validation.

6.6. All adults have the right to make decisions with support All adults have the right to make decisions with support or to name a substitute (e.g. by power of attorney) to or to name a substitute (e.g. by power of attorney) to make decisions for them.make decisions for them.

7. 7. Laws and/or policies that do not recognize supported Laws and/or policies that do not recognize supported decision making or that protect other interests at the decision making or that protect other interests at the expense of the individual’s right to self-determination expense of the individual’s right to self-determination discriminate against persons who have an intellectual discriminate against persons who have an intellectual disability and make them more vulnerabledisability and make them more vulnerable

8. 8. Individuals should never be assessed to determine Individuals should never be assessed to determine competency; decisions should be reviewable if there is competency; decisions should be reviewable if there is concern that the will of the individual is not being concern that the will of the individual is not being respected or that the individual is being exploited.respected or that the individual is being exploited.

9. 9. Any legal system or proceeding which sets up a test of Any legal system or proceeding which sets up a test of competency to be used to appoint a substitute decision-competency to be used to appoint a substitute decision-maker puts the individual at risk of also losing other maker puts the individual at risk of also losing other rights.rights.

10. 10. A decision that could not have been made by A decision that could not have been made by the individual without support, e.g. consent for non-the individual without support, e.g. consent for non-therapeutic sterilization, experimentation or other non-therapeutic sterilization, experimentation or other non-therapeutic procedures which could offend human therapeutic procedures which could offend human dignity, should not be made within supported decision dignity, should not be made within supported decision making relationships.making relationships.

*Coalition on Alternatives to Guardianship*Coalition on Alternatives to Guardianship180 Duncan Mill Road Suite 600180 Duncan Mill Road Suite 600

North York, Ontario M3D 1Z6North York, Ontario M3D 1Z6

People First of OntarioPeople First of OntarioPeople First of CanadaPeople First of Canada

Ontario Association for Community LivingOntario Association for Community LivingCanadian Association for Community LivingCanadian Association for Community Living

Youth Involvement OntarioYouth Involvement Ontario

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TASH TASH RESOLUTIONRESOLUTION ““Be it resolved that TASH, an Be it resolved that TASH, an

international advocacy international advocacy association of people with association of people with disabilities, their family disabilities, their family members and other members and other advocates, and people who advocates, and people who work in the disability field work in the disability field affirms the rights of persons affirms the rights of persons with disabilities and commits with disabilities and commits to the promotion and use of to the promotion and use of alternatives to guardianship alternatives to guardianship rather than the removal of rather than the removal of said rights. TASH urges the said rights. TASH urges the development and promotion development and promotion of the use of of the use of accommodations and accommodations and supports people need to supports people need to make choices and decisions, make choices and decisions, to have their preferences to have their preferences recognized and honored, and recognized and honored, and to have their rights to self-to have their rights to self-determination protected.”determination protected.”

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PAST REASONS FOR PAST REASONS FOR SEEKING SEEKING

GUARDIANSHIP?GUARDIANSHIP?

Medical reasonsMedical reasons ContractsContracts Decisions about Decisions about

programs, records, etc.programs, records, etc. Administrative Administrative

convenienceconvenience Financial decisionsFinancial decisions Placement decisionsPlacement decisions Sex and related issuesSex and related issues What will happen when What will happen when

parents/family are no parents/family are no longer around?longer around?

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WHY AVOID WHY AVOID GUARDIANSHIP?GUARDIANSHIP?

Avoid public declaration Avoid public declaration of incompetencyof incompetency

Promote independence, Promote independence, dignity, freedom of dignity, freedom of choicechoice

People deal with People deal with guardian – not personguardian – not person

Expense – attorneys, Expense – attorneys, hearings, evaluationshearings, evaluations

Courts don’t always Courts don’t always follow law (partial vs. follow law (partial vs. plenary, promote plenary, promote independence, etc.)independence, etc.)

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WHY AVOID WHY AVOID GUARDIANSHIP?GUARDIANSHIP?

(cont’d)(cont’d)

Very difficult to modify Very difficult to modify or terminateor terminate

Attorneys and G.A.L.s – Attorneys and G.A.L.s – very little trainingvery little training

Corporate guardian Corporate guardian problems – take money & problems – take money & independenceindependence

It simply doesn’t do what It simply doesn’t do what you want it to do!you want it to do!

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When the only tool you When the only tool you

have is ahave is a HAMMERHAMMER

Every problem looks like aEvery problem looks like a

NAILNAIL

-Hoyle-Hoyle

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Connecticut Connecticut Supreme CourtSupreme Court

““Guardians appointed Guardians appointed by the court whether by the court whether

limited or plenary, limited or plenary, can be vested with can be vested with substantial powers substantial powers over a respondent. over a respondent.

Therefore…the Therefore…the appointment of a appointment of a

guardian implicates guardian implicates a respondent’s a respondent’s constitutional constitutional

rights…”rights…”

(Oller vs. Oller-Chiang, 1994)(Oller vs. Oller-Chiang, 1994)

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Iowa Supreme Iowa Supreme CourtCourt

Guardianship “…Guardianship “…involves involves

significant loss of significant loss of liberty similarly to liberty similarly to that present in an that present in an involuntary civil involuntary civil commitment for commitment for

treatment of treatment of mental illness.”mental illness.”

((In Re: HedinIn Re: Hedin, quoting Arizona Court of , quoting Arizona Court of Appeals)Appeals)

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California California Supreme CourtSupreme Court

““[A person who has] a [A person who has] a conservator conservator

[appointed] may be [appointed] may be subject to greater subject to greater

control of his or her control of his or her life than one life than one

convicted of a crime”convicted of a crime”

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NATIONAL ELDER NATIONAL ELDER ABUSE AND ABUSE AND

GUARDIANSHIP GUARDIANSHIP VICTIMS TASK VICTIMS TASK

FORCEFORCE “Too often the very Adult

Guardianship and Conservatorship System

meant to protect the elderly are being used as

instruments to violate their rights, rob them of their lifelong savings and

tear them away from their families and loved

ones.”

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““The typical ward has The typical ward has fewer rights than the fewer rights than the

typical convicted typical convicted felon – they no longer felon – they no longer receive money or pay receive money or pay

their bills. They their bills. They cannot marry – or cannot marry – or

divorce… it is, in one divorce… it is, in one short sentence, the short sentence, the most punitive civil most punitive civil penalty that can be penalty that can be levied against an levied against an American citizen, American citizen,

with the exception with the exception of…the death of…the death

penalty”penalty”

--Claude Pepper, U.S. RepresentativeClaude Pepper, U.S. Representative

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Iowa Supreme Iowa Supreme CourtCourt

““In making a In making a determination as to determination as to

whether a whether a guardianship should guardianship should be established…the be established…the court must consider court must consider the availability of the availability of

third party assistance third party assistance to meet a …proposed to meet a …proposed ward’s need for such ward’s need for such

necessities…”necessities…”

(in the Matter of Hedin, 1995)(in the Matter of Hedin, 1995)

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Utah Supreme Utah Supreme CourtCourt

(re: “Responsible (re: “Responsible Decisions”)Decisions”)

“…“…responsible focuses responsible focuses the appointing the appointing

authority’s attention authority’s attention on the on the contentcontent of the of the decision rather than decision rather than on the ability of the on the ability of the individual to engage individual to engage in a rational decision in a rational decision

making making processprocess.”.”

(In re: Boyer)(In re: Boyer)

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““We have to reject the We have to reject the very idea of very idea of

incompetence. We incompetence. We need to replace it with need to replace it with the idea of ‘assisted the idea of ‘assisted

competence’. This will competence’. This will include a range of include a range of supports that will supports that will enable individuals enable individuals

with cognitive with cognitive disabilities to receive disabilities to receive assistance in decision assistance in decision

–making that will –making that will preserve their preserve their

rights…”rights…”

--Thomas Nerney, Director of Self Thomas Nerney, Director of Self Determination for Persons with Determination for Persons with

Developmental DisabilitiesDevelopmental Disabilities

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Pennsylvania Pennsylvania Supreme CourtSupreme Court

““Persons cannot Persons cannot be deemed be deemed

incapacitated if incapacitated if their their

impairments are impairments are counterbalanced counterbalanced by friends, family by friends, family or other support.or other support.

In re: Perry, 727 A2d 539 (Ps. Sup. Ct. 1999)In re: Perry, 727 A2d 539 (Ps. Sup. Ct. 1999)

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CMSCMS(Centers for Medicare and (Centers for Medicare and

Medicaid Services)Medicaid Services)Quality FrameworkQuality Framework

(Includes)(Includes) PERSON-CENTERED PERSON-CENTERED

SERVICE PLANNING SERVICE PLANNING AND DELIVERY:AND DELIVERY:

. . .responses to . . .responses to changing needs/choices and changing needs/choices and

participant directionsparticipant directions RIGHTS AND RIGHTS AND

RESPONSIBILITIESRESPONSIBILITIESProtection of rights and Protection of rights and

decision-making decision-making authority. . .authority. . .

www.cms.hhs.gov/HCBS/downloads/www.cms.hhs.gov/HCBS/downloads/qualityframework.pdfqualityframework.pdf

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ALTERNATIVESALTERNATIVES

Advisors, AdvocatesAdvisors, Advocates

Person-centered planningPerson-centered planning

Power of AttorneyPower of Attorney

Durable Power of AttorneyDurable Power of Attorney

Durable Power of Attorney Durable Power of Attorney for Health Care or for Health Care or Designation of Patient Designation of Patient AdvocateAdvocate

Protective OrdersProtective Orders

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ALTERNATIVES ALTERNATIVES (CONT’D)(CONT’D)

TrustsTrustsContracts – Void Contracts – Void

vs. Voidablevs. VoidableFinancesFinances

Representative Representative PayeePayee

Limited Bank Limited Bank AccountAccountCo-signersCo-signersCeiling Limit Ceiling Limit AccountAccount

Pour-over AccountPour-over Account

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Person Centered Person Centered PlanningPlanning

“’“’Person-centered planning’ Person-centered planning’ means a process for means a process for

planning and supporting the planning and supporting the individual receiving services individual receiving services

tat builds upon the tat builds upon the individual’s capacity to individual’s capacity to engage in activities that engage in activities that

promote community life and promote community life and that honors the individual’s that honors the individual’s

preferences, choices and preferences, choices and abilities. The person-abilities. The person-

centered planning process centered planning process involves families, friends, involves families, friends, and professionals as the and professionals as the

individual desires or individual desires or requires” MCL 330.1700 (g)requires” MCL 330.1700 (g)

Michigan’s Long Term Care Group Report and Michigan’s Long Term Care Group Report and Recommendation, June 2000 at 21Recommendation, June 2000 at 21

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Person Centered Person Centered Planning IS: Planning IS:

Honoring a person’s Honoring a person’s behavior as behavior as communicationcommunication

Choice over many aspects Choice over many aspects of their lifeof their life

Control over what each Control over what each day includes and doesn’t day includes and doesn’t includeinclude

FreedomFreedom Assisting an individual to Assisting an individual to

determine what makedetermine what make their life worth livingtheir life worth living

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Cornerstones of Cornerstones of PCPPCP

Presuming competencePresuming competence Reframing behavior as Reframing behavior as

communicationcommunication Respecting cultural Respecting cultural

diversitydiversity Providing critical supports Providing critical supports

for health and safety for health and safety across the lifespan so across the lifespan so people may live where and people may live where and with whom they wantwith whom they want

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For Non-For Non-Traditional Traditional

Communicators Communicators All behavior is communication.All behavior is communication. Anything you can see, hear, Anything you can see, hear,

touch or count is a behavior.touch or count is a behavior. A person’s behavior tells us what A person’s behavior tells us what

they think about other people, they think about other people, and their living and working and their living and working environments.environments.

Reframing behavior as Reframing behavior as communication is the first step in communication is the first step in understanding the person who understanding the person who does not communicate in a does not communicate in a traditional manner.traditional manner.

PERSON CENTERED PERSON CENTERED PLANNINGPLANNING

A person centered plan assists individuals to create a personalized A person centered plan assists individuals to create a personalized image of a desirable future. The development of a plan image of a desirable future. The development of a plan suggests a process tat can organized and guide community suggests a process tat can organized and guide community change in alliance wit people with disabilities thus building the change in alliance wit people with disabilities thus building the bridge from both sides.bridge from both sides.

Essential to all person centered plans are the following Essential to all person centered plans are the following characteristics:characteristics:

Person DirectedPerson Directed – The plan for the person is that the person’s – The plan for the person is that the person’s vision of what he or she would like to be and do. The plan is vision of what he or she would like to be and do. The plan is not static, but rather it changes as new opportunities and not static, but rather it changes as new opportunities and obstacles arise.obstacles arise.

Capacity BuildingCapacity Building – Planning focuses on the person’s gifts, – Planning focuses on the person’s gifts, talents and skills rather than deficits. It builds upon the talents and skills rather than deficits. It builds upon the individuals to engage in activities that promote a sense of individuals to engage in activities that promote a sense of belonging in the community.belonging in the community.

Person CenteredPerson Centered – The focus is continually on the person for – The focus is continually on the person for whom the pan is being developed, and not on plugging the whom the pan is being developed, and not on plugging the person into available slots in a program. The individual’s person into available slots in a program. The individual’s choices and preference must be honored.choices and preference must be honored.

Network BuildingNetwork Building – The process brings together people who care – The process brings together people who care about the person, and are committed to helping the person about the person, and are committed to helping the person articulate their vision of a desirable future. They learn articulate their vision of a desirable future. They learn together and invent new courses of action to make the vision together and invent new courses of action to make the vision an reality.an reality.

Outcome basedOutcome based – The plan focuses on increasing any or all of – The plan focuses on increasing any or all of the following experiences which are valued by the individual:the following experiences which are valued by the individual:

Growing in relationships or having friends.Growing in relationships or having friends. Contributing or performing functional/meaningful Contributing or performing functional/meaningful

activities.activities. Sharing ordinary places or being part of their own Sharing ordinary places or being part of their own

community.community. Gaining respect or having a valued role which expresses Gaining respect or having a valued role which expresses

their gifts and talents.their gifts and talents. Making choices that are meaningful and express individual Making choices that are meaningful and express individual

identity.identity.

Community AccountabilityCommunity Accountability – The plan will assure adequate – The plan will assure adequate supports when there are issues of health and safety, while supports when there are issues of health and safety, while respecting and according their full dignity as a fully respecting and according their full dignity as a fully participating member of the community.participating member of the community.

Adopted by the Howell Group of Michigan, October 1994Adopted by the Howell Group of Michigan, October 1994

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Preferences determined by Preferences determined by person centered planning person centered planning process are honored unless process are honored unless harmful to the individualharmful to the individual

This process of This process of determining preferences determining preferences and choices enhances the and choices enhances the dignity and self-dignity and self-determination of determination of individualsindividuals

This process is more This process is more reliable than having a reliable than having a court-appointed person to court-appointed person to make decisions with or make decisions with or without input from anyone.without input from anyone.

CONSENT TO AUTHORIZE ADVOCACY AND CONSENT TO AUTHORIZE ADVOCACY AND RELEASE OF INFORMATIONRELEASE OF INFORMATION

I, ____________________ hereby authorize I, ____________________ hereby authorize Community Mental Health to release/ Community Mental Health to release/ exchange information with my parents, exchange information with my parents, _______________ ______________________, _______________ ______________________, which pertains to my services, programs which pertains to my services, programs and living situation. I also wish that my and living situation. I also wish that my parents be invited to any and all meetings parents be invited to any and all meetings about me, and I do not want any decisions about me, and I do not want any decisions made without their input. If CMH has any made without their input. If CMH has any documents I need to sign, my parents must documents I need to sign, my parents must sign first to acknowledge their receipt of sign first to acknowledge their receipt of these documents and their concurrence these documents and their concurrence with them, before I will sign. This with them, before I will sign. This authorization, unless otherwise revoked by authorization, unless otherwise revoked by me, is intended to remain in effect for the me, is intended to remain in effect for the duration of time I receive mental health duration of time I receive mental health services, etc. or until I revoke this services, etc. or until I revoke this authorization, whichever comes first.authorization, whichever comes first.

______________________________________________________________(name)(name)

______________________________________________________________(date)(date)

I, ___________________________, hereby I, ___________________________, hereby authorize ________________________ authorize ________________________ Schools to release / exchange Schools to release / exchange information with my parents, _______ information with my parents, _______ _______________________________, which _______________________________, which pertains to my school program and pertains to my school program and placement. I also wish that y parents be placement. I also wish that y parents be invited to any and all meetings about invited to any and all meetings about me, and I do not want any decisions me, and I do not want any decisions made without their input. If the schools made without their input. If the schools have any documents I need to sign, my have any documents I need to sign, my parents must sign first, before I will sign. parents must sign first, before I will sign. This authorization, unless otherwise This authorization, unless otherwise revoked by me, is intended to remain in revoked by me, is intended to remain in effect for the duration of time I receive effect for the duration of time I receive special education services or until my special education services or until my twenty-seventh birthday, whichever twenty-seventh birthday, whichever comes first.comes first.

______________________________________________________________(name)(name)

______________________________________________________________(date)(date)

CONSENT TO AUTHORIZE ADVOCACY AND CONSENT TO AUTHORIZE ADVOCACY AND RELEASE OF INFORMATIONRELEASE OF INFORMATION

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Medical Power of Medical Power of AttorneyAttorney

Appoint an Agent to Appoint an Agent to handle medical decisions handle medical decisions or support you in medical or support you in medical decisions.decisions.

Can be effective Can be effective immediately.immediately.

Can be as broad or narrow Can be as broad or narrow as desiredas desired

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Patient Advocate Patient Advocate Designations (PADs) Designations (PADs)

for Medical for Medical DecisionsDecisions Exercisable only in event the person is Exercisable only in event the person is

unable to make their own medical unable to make their own medical decisions (certified by two physicians)decisions (certified by two physicians)

Can be individual 18 or over to exercise Can be individual 18 or over to exercise powers related to care, custody and powers related to care, custody and medical treatment decisions of the medical treatment decisions of the person.person.

Includes the individual’s preferences Includes the individual’s preferences regarding care and treatment.regarding care and treatment.

Necessary for withdrawal of life-Necessary for withdrawal of life-sustaining treatment.sustaining treatment.

New Michigan law also permits PADs New Michigan law also permits PADs for mental health decisions. This is also for mental health decisions. This is also a preferred alternative to “Kevin’s Law” a preferred alternative to “Kevin’s Law” (court-ordered, outpatient treatment). (court-ordered, outpatient treatment).

 

(Sample only—revise language or content to reflect the understanding and circumstances of the person signing.)

POWER OF ATTORNEY FOR MEDICAL TREATMENT DECISIONS

 I am _____________________. I live at ___________________________________. I want ________________________ to help me if I am sick and if I need to go to the doctor.My mother/father read this paper to me before I signed it. I understand what he/she told me about this paper before I signed it.If I am sick, my mother/father should take me to the doctor. If she/he is not at my house when I become sick, please call her/him to come to the doctor’s office. I would like the doctor to talk to her/him and tell her/him what the matter is.I would like to ask my mother/father what the doctor should do. I would like the doctor to do what my mother/father tells the doctor to do; she/he knows what is best for me.Sometimes a doctor says that I need to have a shot or some other care. Sometimes a doctor says that I need to take pills or medicine. My mother father will also decide what other care I should have, but she/he will talk to me about what care I need.I would also like my mother/father to decide if I need to go to the dentist.If I am very sick, I might need to go to a hospital. My mother/father can decide if I need to go to the hospital. I would like all of the people at the hospital to speak with my mother/father about what the people at the hospital should do for me. I would like my mother/father to decide about my care at the hospital even if I am unable to understand what my doctor says about me. This is very important since I want the people at the hospital to try very hard to care for me if I am sick. If I need to have an operation because I am very sick, I would like the people at the hospital talk to my mother/father. My mother/father will say “yes” or “no” and that is what the people at the hospital will do.I understand that I want my mother/father to help decide what care I need, and I want people to listen to him or her about my care. If my mother/father is not happy with my doctor, then he or she is able to get another doctor to care for me.

_______________________________ _____________________(Signature or Mark) (Date)

_______________________________ _____________________(Witness) (Date)

_______________________________ _____________________(Witness) (Date)

Rough draft – revise language or content to reflect the understanding and circumstances of person Rough draft – revise language or content to reflect the understanding and circumstances of person signingsigning

DESIGNATION FOR DURABLE POWER OF ATTORNEY FOR MEDICAL TREATMENT, RESIDENTIAL PLACEMENT, AND

PROGRAM DECISIONS

I am _________________________________ and I live at _________________________. I want my mother, ______________________________to help me if I am sick and need to see a doctor. I want her to make decisions about my medical care, including medication and surgery.

I also want my mother, ___________________________ to make decisions about where I will live. She can sign any papers needed to arrange for a place for me to live.

I also want her to make decisions about work and other programs that I participate in.

If my mother, ______________________________ is not available, I would like my ___________________, ________________________________ to make these decisions instead.

If neither of the above are available, I would like my __________________________, _____________________________ to make these decisions.

I would like these powers to last even if I become unable to understand this form in the future. I understand that if I want to change my mind about who makes these decisions, I can destroy this paper or let people know I want to change my mind.

_______________________ ________________________________________(Date) (Signed)

STATEMENT OF WITNESSESWe sign below as witnesses. This was signed in our presence. The signer appears to be of sound mind, and to be making this designation voluntarily, without duress, fraud or undue influence.

Signed by witness: _________________________________ _________________________________

(Print full name)

Signed by witness: _________________________________ _________________________________

(Print full name)

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Representative Representative PayeePayee

A representative payee is a person or organization designated through the Social Security Administration to handle a person’s Social Security check SSA has special paperwork and procedures for appointing a representative payee Can be changed or revoked only if SSA consents

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Personal Money Personal Money ManagerManager

Personal Money Managers Personal Money Managers are individuals or are individuals or organizations that can organizations that can handle finances for an handle finances for an individuals. Services individuals. Services include:include: Paying billsPaying bills Managing financesManaging finances Handling InvestmentsHandling Investments Troubleshooting Troubleshooting

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Automatic Bill Automatic Bill PayingPaying

Automatic bill payment Automatic bill payment can be set up for an can be set up for an individualindividual

Eliminates the ongoing Eliminates the ongoing need for bill payment need for bill payment assistanceassistance

Periodic monitoring is Periodic monitoring is helpfulhelpful

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CREDIT CARDSCREDIT CARDS

TWO METHODS TO OPT-OUT FORTWO METHODS TO OPT-OUT FOR

CREDIT CARD OFFERSCREDIT CARD OFFERS

Five Year Opt – OutFive Year Opt – Out

Complete form online (secure website)Complete form online (secure website)

at: at: www.optoutprescreen.comwww.optoutprescreen.com

Permanent Opt – OutPermanent Opt – Out

Form must be printed, signed andForm must be printed, signed and

mailed. (five year opt-out may bemailed. (five year opt-out may be

completed in the interim)completed in the interim)

Call: 1 (888) 567-8688Call: 1 (888) 567-8688

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Estate Planning Estate Planning for People with for People with

DisabilitiesDisabilities Estate Planning Estate Planning

for people with for people with disabilities is disabilities is generally done to generally done to preserve eligibility preserve eligibility for governmental for governmental benefits that benefits that provide essential provide essential services.services.

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TrustsTrusts Grantor (owner of Grantor (owner of

property) transfers property) transfers property to a Trust, property to a Trust, which could include real which could include real estate, bank accounts, estate, bank accounts, stocks and bonds.stocks and bonds.

The Trust assets are The Trust assets are administered by a administered by a Trustee.Trustee.

The Trustee must The Trustee must manage the assets and manage the assets and make expenditures for make expenditures for the designated Trust the designated Trust Beneficiary in accordance Beneficiary in accordance with the trust document.with the trust document.

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TrustsTrusts Settlor/GrantorSettlor/Grantor

Creates the TrustCreates the Trust TrusteeTrustee

Manages the TrustManages the Trust BeneficiaryBeneficiary

Receives the Receives the beneficial use of beneficial use of the trustthe trust

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Types of TrustsTypes of Trustsfor People with for People with

DisabilitiesDisabilities

Support TrustSupport Trust Amenities TrustAmenities Trust Payback TrustPayback Trust Pooled TrustPooled Trust

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Fiduciary DutyFiduciary Duty A Fiduciary is someone A Fiduciary is someone

who has undertaken a who has undertaken a relationship of trust and relationship of trust and confidence to act on confidence to act on behalf of another person.behalf of another person.

The Fiduciary duty is the The Fiduciary duty is the highest standard of care highest standard of care in law or equity.in law or equity.

A Fiduciary must put the A Fiduciary must put the person’s interest before person’s interest before his or her personal his or her personal interest.interest.

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Support TrustSupport Trust Provides for support, care Provides for support, care

and maintenance of the and maintenance of the beneficiarybeneficiary

Can be created and funded Can be created and funded by anyone including by anyone including beneficiarybeneficiary

Does Does notnot preserve eligibility preserve eligibility for government benefits for government benefits (e.g., Medicaid, SSI)(e.g., Medicaid, SSI)

Typically established by Typically established by family members for family members for individuals with special individuals with special needs who do not need needs who do not need government benefitsgovernment benefits

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Third-Party Third-Party (Amenities) (Amenities)

TrustTrust Established and funded Established and funded

with assets of a third party with assets of a third party (e.g. family member)(e.g. family member)

Provides for amenities or Provides for amenities or extra items or services only extra items or services only (e.g., advocacy, recreational (e.g., advocacy, recreational activities, home furnishings, activities, home furnishings, haircuts, music therapy) haircuts, music therapy)

If properly written, If properly written, preserves beneficiary’s preserves beneficiary’s eligibility for government eligibility for government benefitsbenefits

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Benefits of Benefits of Amenities Amenities

TrustsTrusts Preserves Eligibility for Preserves Eligibility for

Government BenefitsGovernment Benefits

Provides for an enhanced Provides for an enhanced quality of life for the quality of life for the beneficiarybeneficiary

Provides for Trustee to Provides for Trustee to Act as an AdvocateAct as an Advocate

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Pooled Accounts Pooled Accounts TrustTrust

Used to preserve Used to preserve government benefitsgovernment benefits

Established and Established and administered by a administered by a non-profit non-profit organization.organization.

Sub-accounts are Sub-accounts are established for the established for the benefit of the benefit of the individual.individual.

Remaining assets at Remaining assets at death are left with the death are left with the non-profit non-profit organization.organization.

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Pay Back (Self-Pay Back (Self-Settled) TrustsSettled) Trusts

Established by a family Established by a family member or designated member or designated individual with trust powersindividual with trust powers

Funded with the Beneficiary’s Funded with the Beneficiary’s own funds (e.g., funds own funds (e.g., funds awarded from lawsuit)awarded from lawsuit)

To provide for amenities or To provide for amenities or extra items to promote quality extra items to promote quality of life and independenceof life and independence

Primarily used to preserve Primarily used to preserve government benefitsgovernment benefits

Requires language in the trust Requires language in the trust that upon the death of the that upon the death of the individual, the State is paid individual, the State is paid back back firstfirst for any government for any government benefits paid during his/her benefits paid during his/her lifetime before distributing lifetime before distributing rest of trust assets to anyone rest of trust assets to anyone elseelse

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Trust can be used Trust can be used for:for: Medical treatment beyond MedicaidMedical treatment beyond Medicaid

Dental CareDental Care

Educational or Vocational servicesEducational or Vocational services

Recreation expenses or outingsRecreation expenses or outings

Travel for beneficiary or siblings, Travel for beneficiary or siblings, etc.etc.

Books, magazines, cable television, Books, magazines, cable television, phone callsphone calls

Monitoring expensesMonitoring expenses

Non-standard or non-covered Non-standard or non-covered personal servicespersonal services

Can purchase home & rent to Can purchase home & rent to beneficiary with or without beneficiary with or without roommates (payments must cover roommates (payments must cover total cost of home)total cost of home)

Can make the difference between Can make the difference between success & failure of a placementsuccess & failure of a placement

Favors consumer choice & inclusionFavors consumer choice & inclusion

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Amenities TrustsAmenities TrustsExhibit 12.2Exhibit 12.2

A List of AmenitiesA List of Amenities Acupuncture/acupressureAcupuncture/acupressure AdvocacyAdvocacy Appliances (TV, VCR, stereo, microwave, stove, refrigerator, washer/dryer)Appliances (TV, VCR, stereo, microwave, stove, refrigerator, washer/dryer) Bottled waterBottled water Bus pass/ public transportation feesBus pass/ public transportation fees Clubs and club dues (record clubs, book clubs, health clubs, service clubs)Clubs and club dues (record clubs, book clubs, health clubs, service clubs) Computer (hardware, software, programs, internet service)Computer (hardware, software, programs, internet service) Courses or classes (academic or recreational)Courses or classes (academic or recreational) Curtains, blinds, drapesCurtains, blinds, drapes Dry cleaning and laundry servicesDry cleaning and laundry services Elective surgeryElective surgery Fitness equipmentFitness equipment Furniture, home furnishingsFurniture, home furnishings Gasoline for automobileGasoline for automobile Haircuts/ salon servicesHaircuts/ salon services House cleaning/maid servicesHouse cleaning/maid services Insurance (automobile, home, and/or possessions)Insurance (automobile, home, and/or possessions) Linens and towelsLinens and towels MassageMassage Musical instruments (including lessons)Musical instruments (including lessons) Nonfood grocery items (laundry soap, bleach, fabric softener, deodorant, Nonfood grocery items (laundry soap, bleach, fabric softener, deodorant,

dish soap, hand and body soap, personal hygiene products, paper towels, dish soap, hand and body soap, personal hygiene products, paper towels, napkins, Kleenex, toilet paper, any household cleaning products)napkins, Kleenex, toilet paper, any household cleaning products)

Over-the-counter medications (including vitamins or herbs)Over-the-counter medications (including vitamins or herbs) Personal assistancePersonal assistance Pet, pet suppliesPet, pet supplies Physician specialistsPhysician specialists Private counselingPrivate counseling Repair services (appliance, automobile, bicycle, household)Repair services (appliance, automobile, bicycle, household) Retail store charge accounts (gift stores, craft stores, hardware stores, pet Retail store charge accounts (gift stores, craft stores, hardware stores, pet

stores)stores) Sporting goods/ equipmentSporting goods/ equipment Taxi cab scripTaxi cab scrip Tickets to concerts or events (for beneficiary and an accompanying Tickets to concerts or events (for beneficiary and an accompanying

companion)companion) Transportation (automobile, motorcycle, bicycle, moped)Transportation (automobile, motorcycle, bicycle, moped) Utility bills (telephone, cable TV, electric, heating)Utility bills (telephone, cable TV, electric, heating) Vacation (including paying for a companion to accompany the beneficiary)Vacation (including paying for a companion to accompany the beneficiary)

This list was compiled by Marsha Rose Katz, formerly of the Washtenaw Association for Community Advocacy, and was This list was compiled by Marsha Rose Katz, formerly of the Washtenaw Association for Community Advocacy, and was enhanced by Teryl J.McCoy, a paralegal assistant in the Law Office of Joel S. Welber.enhanced by Teryl J.McCoy, a paralegal assistant in the Law Office of Joel S. Welber.

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Self-Self-Determination Determination

PrinciplesPrinciples FreedomFreedom: The ability to plan a : The ability to plan a

life, rather than purchase a life, rather than purchase a programprogram

AuthorityAuthority: Ability for a person : Ability for a person with a disability to control a with a disability to control a certain sum of dollars to purchase certain sum of dollars to purchase supportssupports

SupportSupport: Arranging resources : Arranging resources and personnel, both formal & and personnel, both formal & informal, to achieve meaningful informal, to achieve meaningful participationparticipation

ResponsibilityResponsibility: Acceptance of a : Acceptance of a valued community role, through valued community role, through employment, affiliations, spiritual employment, affiliations, spiritual development and caring for development and caring for others, as well as accountability others, as well as accountability for public dollarsfor public dollars

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SELF-SELF-DETERMINATIODETERMINATIO

NN

1.1.FREEDOMFREEDOM

2.2.AUTHORITYAUTHORITY

3.3.SUPPORT SUPPORT

4.4.RESPONSIBIRESPONSIBILITYLITY

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FreedomFreedom

LibertyLiberty

IndependenIndependencece

AutonomyAutonomy

SovereigntySovereignty

GuardianshiGuardianshipp

Lack of ControlLack of Control

DisparagementDisparagement

No PowerNo Power

Loss of RightsLoss of Rights

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AuthoritAuthorityy

ControlControl

MasteryMastery

PowerPower

RightsRights

GuardianshiGuardianshipp

Lack of ControlLack of Control

DisparagementDisparagement

No PowerNo Power

Loss of RightsLoss of Rights

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SupportSupport

LivelihoodLivelihood

IndependeIndependencence

AccessibiliAccessibilityty

ConfidencConfidencee

GuardianshipGuardianship

DependenceDependence

Lack of Lack of

FreedomFreedom

More exclusion More exclusion from from communitycommunity

Low Self-Low Self-esteemesteem

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ResponsibResponsibilityility

AccountableAccountable

CommittedCommitted

EmpoweredEmpowered

DecisiveDecisive

GuardianshiGuardianshipp

Lack of Lack of ControlControl

DisparagemenDisparagementt

No PowerNo Power

Loss of RightsLoss of Rights

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Desired vs. Desired vs. CurrentCurrent

Person-centered Person-centered planningplanning

Life outcomesLife outcomes Build on Build on

capacities and capacities and abilitiesabilities

Behavior as Behavior as communicationcommunication

Choice and Choice and controlcontrol

Supports and Supports and Personal Personal AssistanceAssistance

Own HomeOwn Home Supports Supports

CoordinationCoordination Inclusion and Inclusion and

self-self-determinationdetermination

Consumer Consumer Satisfaction as Satisfaction as test of qualitytest of quality

Interdisciplinary Interdisciplinary TeamsTeams

AssessmentsAssessments Goals Goals

Determined by Determined by DeficitsDeficits

Behavior Behavior ManagementManagement

Beds and SlotsBeds and Slots

Agency and Agency and Provider staffProvider staff

Congregate Congregate /Program /Program

Case Case ManagementManagement

Medical ModelMedical Model

Monitoring and Monitoring and Inspection of Inspection of carecare

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One of the biggest One of the biggest challenges facing challenges facing us as we enter the us as we enter the twenty-first twenty-first century…lies in the century…lies in the overemphasis, even overemphasis, even dependency, on dependency, on power control, power control, paternalism, and, paternalism, and, ultimately, ultimately, coercion.”coercion.”

Rod CopelandRod Copeland

Commissioner of the Vermont DepartmentCommissioner of the Vermont Department

of Developmental and Mental Healthof Developmental and Mental Health

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In the real world, people In the real world, people die for their freedoms. In die for their freedoms. In the field of [developmental the field of [developmental disabilities], they hold disabilities], they hold conventions or invite each conventions or invite each other to conferences. In other to conferences. In the real world, people the real world, people learn from each other, and learn from each other, and protect each other. In the protect each other. In the field of [developmental field of [developmental disabilities], one must be disabilities], one must be licensed to teach, certified licensed to teach, certified to treat, and commissioned to treat, and commissioned to protect. That which is to protect. That which is considered to be good in considered to be good in the field of [developmental the field of [developmental disabilities] is disabilities] is professionally controlledprofessionally controlled..

Burton Blatt, 1981Burton Blatt, 1981

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What is least restrictive about What is least restrictive about the real world derives from the real world derives from thousands of years of human thousands of years of human discourse under such diverse discourse under such diverse leaders as Attila and Lincoln, leaders as Attila and Lincoln, Pharaoh and Moses, George III Pharaoh and Moses, George III and George Washington, Martin and George Washington, Martin Luther and Martin Luther King. Luther and Martin Luther King. What’s most restrictive about the What’s most restrictive about the world of [developmental world of [developmental disabilities] derives from 200 disabilities] derives from 200 years of professional interest in years of professional interest in pathology rather than the pathology rather than the universality of people. universality of people. Professionals have created much Professionals have created much of the need to do something of the need to do something about the problem of too about the problem of too restrictive environments forced restrictive environments forced upon [people with disabilities]. upon [people with disabilities]. We have created or been much of We have created or been much of the problem, and now we seem the problem, and now we seem anxious to do something, but less anxious to do something, but less to rescue [people with to rescue [people with disabilities] than to redeem disabilities] than to redeem ourselves, less to obtain their ourselves, less to obtain their freedoms than to establish ours, freedoms than to establish ours, less because they need us than less because they need us than because we need them.” because we need them.” Burton Burton Blatt, 1981Blatt, 1981