1. After the Alzheimer’s Diagnosis: Legal Planning
Erica Wood, Esq.
Commission on Law and Aging
American Bar Association
National Press Foundation
May 24, 2011

2. 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
So will focus on these areas

3. Plan How to Pay for Health Care and Support Needs
Employer-based disability benefits
Some employers have short-term or long-term disability insurance
Social Security disability benefits
Recent SSA decision to fast track disability decisions for individuals with Alzheimer’s disease
Supplemental Security Income benefits
Means tested program by SSA
Veterans benefits
Broad array of financial benefits

4. Plan How to Pay for Health Care Needs
Medicare
Primary payer for individuals with Alzheimer’s disease; eligible at 65 or after 24 months on SSDI
Private health insurance
Employer-based or private insurance
Long term care insurance
Medicaid
Federal/state program for low income individuals and children
Each state’s program is different
Veterans benefits
Broad array health care benefits, including long-term care benefits and nursing home care

5. 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?

6. What is Surrogate Decision-Making?
POA, AD, RP & GD all forms of SURR DEC MAK
Means someone ELSE is making a decision FOR you, on your BEHALF – be it a financial agent you have appointed, hc proxy, or RP appted by SSA or GD appted by judge in court.
NOT Money Manager – ref to ethics?
Terminology: please don’t say POA, or ADVANCED directive!!!
So why the shoes??
Because a surrogate, ideally and ethically, is STEPPING INTO THE SHOES of the person – that means trying to make decisions as you would have made ..
Using YOUR values as measure & guide.
Technically, here are the words. There are two stds of DEC-MAK
Best interests & substitutted judgment. EXPLAIN. Just remember shoes.
What triggers a surrogate taking over YOUR decisions, making judgments about YOUR money and life?
Triggered by loss of DECISIONAL CAPACITY

7. Families decide (Devolved/Default)
Courts decide (Displaced)
Individual
(Directed)
Others designated by individual
(Delegated)

8. 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.
Full Faith and Credit provided

9. Types of Advance Directives
Living Wills –
Directive that provides guidance or instruction about the care and decisions wanted
Usually includes specific instructions on life-sustaining conditions
Power of Attorney for Health Care
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

10. What ADs Can Do
CAN be an important part of a communication process in “advance care planning”
CAN help you stop and think and DISCUSS.
Less about specific medical decisions, more about GOALS, VALUES & PRIORITIES:
CAN empower and give direction if reflective of the patient’s voice.
Not the legislature’s canned language.

11. 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.

12. 30 years of Research on Advance Directives
Most people don’t do.
Hard to understand the forms.
Standard form not useful guidance.
People change mind.
Agent/proxy slightly better than clueless.
Health care providers clueless about the directive.
Even if providers know directive exists, it’s lost in space.
Even if in the record, it’s still lost in space.

13. Communication is Key to Advance Planning
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

14. Guidance for Health Care Agents, Proxies
Steps in making medical
decisions
Working within health
care system
Addressing disputes
Special challenges
in medical decisions

15. “Advance 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

16. POLST – Why It Is a Sea Change
Last 30 years: standardizing patient communications –
statutory advance directives
POLST Paradigm – standardizing physicians EOL orders in order to implement patient’s goals of care. Focus on here and now, high probability crises.
POLST – requires:
Find out patient’s wishes re: CPR, care goals (comfort vs. treatment), antibiotics, N&H.
Translate into doctors orders on visually distinct (bright pink) med file cover sheet.
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

18. Default Surrogate Laws (Family Consent)
Range/Priority of Surrogates
Scope of Decision Making Authority
Triggers/Pre-conditions
How Disagreements are Handled
Close Friend and Unbefriended Patient
Summary chart:
The Unbefriended:
No decisional capacity to give informed consent
No advance directive
No capacity to execute advance directive
No guardian
No family or friends

19. 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

20. Powers of Attorney For property
Durable – since planning for incapacity
Document by which one person (“principal”) gives legal authority to another (“agent”) to act on behalf of the principal.
Generally must be signed & notarized.
Governed by state law
Lets talk about POA.
Lets talk about the word “durable” as in durable POA. What does it mean? XXX car sale; now uniform act
POA = legal document
By which One person (prin)
Gives legal authority
To another (agent, not POA)
To act on behalf of prin.
Each state has POA statutory requirements and case law, but generally, must be signed and notarized.
May be effective at time signed OR may be “springing” – that is, springing into action as triggered by some event, such as doc’s declaration of lack of dec mak ability. But springing POA can be difficult, as must be clear on who dets incap and with what criteria.
Another consideration is that TPs may be reluctant to recogize – although now more widely used. Some banks recog only their own form

21. PoA Advantages/Disadvantages
Promotes autonomy – puts you in drivers seat
Avoids guardianship
Cuts costs
Helps family members
Lack of monitoring
Unclear standards for agent conduct
Lack of awareness of risks
Broad decision-making authority
Soo, is a POA good or not so good? Answer is YES>
Distinct adv & disadv
Adv talked about; helps family members in that gives them clarity and authority when needed.
But on other hand:
-No outside monitoring. No eyes are on. No one looking, and when person’s acuity declines, it is very easy to take advantage.
-May be drafted so as to give directions or standards for agent that are ambiguous, less than clear. And the authority it grants may be very broad,
-Can be risky business, in fact

22. Types of POA Abuse In creating of the POA (power given, not taken)
Incapacity at execution
Forgery/Fraud/Misrepresentation
Undue influence
Implementing POA (agent is a fiduciary)
Transactions exceeding intended authority
Transactions conducted for self-dealing
Transactions contravening principal’s expectations

23. “Brooke Astor’s Son Guilty in Scheme to Defraud Her”
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
. . . As shown in the recent Brooke Astor case.
Brooke Astor was a wealthy NY socialite and philanthropist – who at over 100 had Alzheimer’s – and an estate worth mover $180 million. So the makings were there.
She had appointed her son Tony Marshall as power of attorney.
A massive and longlasting criminal trial finally concluded a few months ago with the conviction of the son on charges that he defrauded his mother and stole tens of millions of dollars from her as she suffered from dementia in the twilight of her life.
Raise; other counst of financial exploitation. Neglected her care while enriching himself.
The case reminds us in dramatic way that powers of attorney can be risky business because they convey broad authority with little or no oversight – and reminds us that financial elder abuse is not uncommon, and that there is need for passage of the long-awaited Elder Justice Act now pending before Congress.
It happened to Brook Astor big time – but it happens on a smaller scale with frightening frequency You may have seen it . . .

24. 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
Soo, do we throw the baby out w bath water and say a poz on POA? No, there are some common sense protections that can help . . .
First, of course, never appoint anyone as agent unless you have trust & confidence. If you don’t have such a person or entity, don’t use a POA.
Within the doc itself, can limit gifting powers – so for X, Brooke Astor’s son could not gift himself with such large sums.
You can require co-signature for key transactions A pretty straightforward safeguard . . .
You can always require periodic accountings. After all, you as principle are in charge and can put in whatever accountability measures you want – although again, they may be difficult to enforce.
And the bottom line – you can always REVOKE the POA if things go wrong or change your mind – as long as still have capacity . . .(Astor could not.)
Finally, while may be easy to go down to local stationary store and pick up a POA form, prudent to have atty do it. Really a “standard” POA won’t serve very well, and you want to customize to fit your needs – esp as to breadth of the powers and the accountability required.
Also, atty will make sure it meets requirements of your STATE LAW

25. Uniform Power of Attorney Act
Clear statement of agent’s duties
Act in accord with principal’s expectations, best interests
Stringent requirements for exercising “hot powers” likely to dissipate property or alter estate plan
Third party refuse to honor if suspect abuse
Liability of agents who commit malfeasance
See .
Each state has its own POA statute, and they of course differ in degree of protection required.
There is now a Uniform – or model – Power of Atty Act that states can enact, that builds in key protections, such as:
Clear statement agent’s duties
An out and out statement that agent must act according to principle’s best interest – seems elementary, but must be clearly stated.
Special protections for the most risky or “hottest” powers that could change the estate plan in a major way or dissipate property.
Provision that TP can refuse to honor the document if the TP suspects there may be abuse . . .
And certainly liability of agents who commit malfeasance. ABA PPI In-Brief, how your state measures up

26. Other Options Joint Bank Accounts: 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
Inter-vivos or “Living” Trust: 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)

27. Other Options Representative Payee
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)

28. Other Key Planning Considerations
Develop succession plan of a business
Including power of attorney to run a business and buyout agreements
Consider other public benefits, if appropriate
Including food stamps, state prescription drug benefit programs, energy assistance
Prepare will
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
Plan for care of Dependents
Nominate or appoint a guardian for minor/disabled child
Arrange for financial support for minor/disabled child

29. 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 – “guardian” “conservator” and more

30. Guardianship: A Double-Edged Sword
Parens patriae roots of guardianship
Guardianship “unpersons” individual (Associated Press, 1987)
Loss of fundamental rights
Inherent Tension
Between rights and needs
Between autonomy and beneficence
Between self-determination and protection
Parens Patriae = PROTECTIVE; but at same time, means drastic LOSS of RIGHTS
[Latin, Parent of the country.] A doctrine that grants the inherent power and authority of the state to protect persons who are legally unable to act on their own behalf.
UNPERSONS an indiv
INHERENT TENSION
Ideally, a GD should help you exercise your autonomy & self det – within protective limits – but sadly that’s not what always happens.

31. 51 State Guardianship Laws; Variability in Practice

32. How is a Guardian Appointed?
“Any person” files petition
Notice, possible appointment of counsel, “guardian ad litem,” court visitor
Hearing
Judicial order – “plenary” or “limited”
Bond
Soo, Guardianship, The Basics . . .
Court is actually the guardian

33. 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 “substituted judgment standard of decision-making”
According to every state law, gd is rooted in a CONSTIT principle called LRA –
Means if gov’t -- in this case, the state – has to intervene for public safety or public good, govt should use the LEAST RESTRICTIVE means possible.
So how does this apply here?
First, if you can use another means of SURR DEC MAK, don’t turn to Gd. IF you can use a POA or trust RP – or maybe a MM will help to avoid gd.
Seek to avoid gd through use of LRA
AND, if gd nec, make it as LIMITED as possible . . .
AND, if gd nec, the gd should seek to involve the incap in dec mak . .
And if cannot, step into shoes and use substit judgmment std so make dec as person would have.

34. 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
Guarding the Guardians: Promising Practices for Court Monitoring, AARP/ABA (2007)
State law + court practice requires court OVERSIGHT . .
But in real world, court budgets often strapped . . .
and reports may not be timely filed by gds . . .
Of if filed, may not be read by court staff . .
And if read, may not always have means to send out invest, call gd in and exercise sanctions.
One thing my office at ABA Commission does is helps court find ways to better monitor guardians. An ongoing CHALLENGE . . .

35. Get Legal Documents in Order
Collect all important legal documents
Including birth certificate, citizenship papers, advance directives, power of attorney, trust documents, will and more
Store important legal documents in a safe and accessible location.
Let people know where the important documents are kept

36. 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.