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 Today¶s Talk _
Key steps to get affairs in order after diagnosis of
serious illness such as Alzheimer¶s disease

± Paying for health care and support

± Managing health and personal decisions
± Managing money and property
± Other key planning considerations
± Last resort: guardianship
± Get legal documents in order
 Plan How to Pay for Health Care
and Support Needs
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± Some employers have short-term or long-term disability
insurance
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± Recent SSA decision to fast track disability decisions
for individuals with Alzheimer¶s disease
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± Means tested program by SSA
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± Broad array of financial benefits
 Plan How to Pay for Health Care Needs

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± Primary payer for individuals with Alzheimer¶s disease; eligible at
65 or after 24 months on SSDI
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± Employer-based or private insurance
± Long term care insurance
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± Federal/state program for low income individuals and children
± Each state¶s program is different
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± Broad array health care benefits, including long-term care benefits
and nursing home care
 Managing Health
& Personal Decisions
‡ At some point, someone else will have to
make health care decisions for an individual
with dementia
‡ Who will be the decision maker?
‡ What guidance will be provided in advance?
‡ How will it be communicated?
What is Surrogate Decision-Making?
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Individual
(Directed)

Others
designated by
individual
(Delegated)
 Health Care Advance Directives

‡ In the 1970s -1980s, states generally enacted

multiple laws: Living Will, Health Care Powers of
Attorney with overlap from consent laws.
‡ Today about half the states have combined/
comprehensive Advance Directive laws
‡ But still much variation in detail, especially focused
on forms.
 Types of Advance Directives

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‡ Directive that provides guidance or instruction
about the care and decisions wanted
‡ Usually includes specific instructions on life-
sustaining conditions
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‡ Choose an agent/proxy (and successor) to make
health care decisions if unable to make them
‡ Should be someone who can be a strong
advocate and willing to make difficult decisions
 What ADs Can Do
1. CAN be an important part of a
communication process in ³advance
care planning´
2. CAN help you stop and think and
DISCUSS.
Less about specific medical decisions, more
about GOALS, VALUES & PRIORITIES:
3. CAN empower and give direction if
reflective of the patient¶s voice.
Not the legislature¶s canned language.
 What ADs Can¶t Do
‡ Can¶t provide cookbook directions.
‡ Can¶t change fact that dying is
complicated.
‡ Can¶t eliminate personal ambivalence.
‡ Can¶t be a substitute for Discussion.
‡ Can¶t control health care providers.
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‡ Not every medical decision can be anticipated

‡ Communicate wishes, quality of life goals,

values and priorities that are important

‡ Discussions are difficult but most important for

loved ones and the individual with the disease
 Guidance for Health Care Agents, Proxies

M Steps in making medical

decisions
M Working within health
care system
M Addressing disputes
M Special challenges
in medical decisions
 ³Advance Care Planning´

‡ Less focus on formal instructional documents

‡ Legal focus primarily on naming a proxy
‡ Discussion oriented (with proxy, family, health
care providers)
‡ More broadly focused on goals + values,
spiritual questions, family matters
‡ Less treatment focused, more on quality of life
‡ Conversion of goals to a portable plan of care:
POLST if available
 POLST ± Why It Is a Sea Change
‡ Last 30 years: standardizing patient communications ±
statutory advance directives
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 Paradigm ± standardizing physicians EOL orders
in order to implement patient¶s goals of care. Focus on
here and now, high probability crises.
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 ± requires:
1. Find out patient¶s wishes re: CPR, care goals
(comfort vs. treatment), antibiotics, N&H.
2. Translate into doctors orders on visually distinct
(bright pink) med file cover sheet.
3. Ensure form travels with patient.

At least 12 States have a version of POLST:

CA, HI, ID, MT, NY, NC, OR, TN, UT, VT, WA, WV
 Default Surrogate Laws
(Family Consent)

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 Make a Plan to Manage Money
& Property
‡ Planning for management of affairs while
alive helps maintain control to the
greatest extent possible
‡ Variety of legal tools
‡ Powers of Attorney
‡ Representative Payee
‡ Joint bank accounts
‡ Inter-vivos or Living Trusts
‡ Advantages and disadvantages of each
 Powers of Attorney
‡ For property
‡ Durable ± since planning for incapacity
‡ Document by which one person
(³principal´) gives legal authority to another
(³agent´) to act on behalf of the principal.
‡ Generally must be signed & notarized.
‡ Governed by state law
PoA Advantages/Disadvantages
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 Types of POA Abuse

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;c (power given, not taken)

m Incapacity at execution
m Forgery/Fraud/Misrepresentation
m Undue influence

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m Transactions exceeding intended authority
m Transactions conducted for self-dealing
m Transactions contravening principal¶s expectations
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‡ Wealthy NY socialite Brooke Astor, Alzheimer¶s, age 105
‡ Estate more than $180 million
‡ Son served as power of attorney
‡ Gave self unauthorized raise of $1 million
‡ Other counts of financial exploitation
‡ Neglected mother¶s care while enriching self
‡ Exemplifies financial
elder abuse
 Build Protections into DPA

‡ Choose someone you trust

‡ Limit gifting powers
‡ Require co-signatory on important
transactions
‡ Require periodic accountings
‡ Revocable as long as still have capacity
‡ Seek advice of attorney to customize &
ensure meets state law requirements
 Uniform Power of Attorney Act
´ Clear statement of agent¶s duties
´ Act in accord with principal¶s expectations, best
interests
´ Stringent requirements for exercising ³hot
powers´ likely to dissipate property or alter
estate plan
´ Third party refuse to honor if suspect abuse
´ Liability of agents who commit malfeasance
´ See www.nccusl.org .
 Other Options
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pros & cons
± Provides easy access to funds to pay bills
± Joint owners have complete access to all funds
± Funds may be available to pay joint owner¶s debts
± Upon death surviving joint owner may become sole
owner regardless of will

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: pros & cons

± Legal arrangement created by contract
± Holds property for the benefit a person or persons
± Can provide for management of assets during
incapacity, avoid probate and provide for care of
minors or disabled persons
± Can be expensive to draft, to transfer property into the
trust and to pay a professional trustee (if used)
 Other Options
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± If receive SSA, civil service, railroad retirement, VA

benefits, agency may require individual to be
appointed as a representative payee

± Once appointed, the rep payee has authority to

manage the relevant income -- but not other income or
assets.

± Rep payee may have to file an annual report (SSA)

 Other Key Planning Considerations
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± Including power of attorney to run a business and buyout agreements

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± Including food stamps, state prescription drug benefit programs, energy
assistance

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± Legal document that provides for distribution of some or all property at
death
± If a single parent of a minor or disabled child, can designate a guardian
of the child

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± Nominate or appoint a guardian for minor/disabled child
± Arrange for financial support for minor/disabled child
 Guardianship

‡ Individual (or agency) appointed by court

(probate, general jurisdiction) . . . .
‡ With power and duty to make personal and/or
financial decisions . . . .
‡ On behalf of another person . . .
‡ Whom court determines lacks decisional
capacity.
‡ Terminology ± ³guardian´ ³conservator´ and
more
 Guardianship:
A Double-Edged Sword
‡ Oarens patriae roots of guardianship
‡ Guardianship ³unpersons´ individual (Associated
Press, 1987)
‡ Loss of fundamental rights
‡ Inherent Tension
± Between rights and needs
± Between autonomy and beneficence
± Between self-determination and protection
51 State Guardianship Laws;
Variability in Practice
 How is a Guardian Appointed?

‡ ³Any person´ files petition

‡ Notice, possible appointment of counsel,
³guardian ad litem,´ court visitor
‡ Hearing
‡ Judicial order ± ³plenary´ or ³limited´
‡ Bond
 Principle of Least Restrictive Alternative
‡ Growing use of alternatives to guardianship
± Representative payee
± Power of attorney
± Trust
± Supports such as money management
± Guardianship as LAST RESORT
‡ Enactment of limited guardianship provisions
‡ Use of ³substituted judgment standard of
decision-making´
 Guardian Accountability ±
Who Guards the Guardians?
‡Reports & Accounts
‡Protection of Assets
‡Court Review of Reports
& Accounts
‡Investigation,Verification
& Sanctions
‡Guardian Training/
Assistance
‡Funding for Monitoring
‡ arding the  ardians:
Oromising Oractices for
Co rt Monitoring,
AARP/ABA (2007)
 Get Legal Documents in Order
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± Including birth certificate, citizenship papers,
advance directives, power of attorney, trust
documents, will and more
± Store important legal documents in a safe and
) location.
± Let people know where the important
documents are kept
 Conclusion
‡ When faced with diagnosis like Alzheimer¶s
disease, its critical to get financial and legal
affairs in order.
‡ Communicate with family, close friends and
trusted legal/financial advisors.
‡ Understanding options and making informed
decisions can help maximize control and
minimize anxiety at a difficult time.