Alzheimer’s Issues: After the Diagnosis

Leslie B. Fried, Esq.

Commission on Law and Aging American Bar Association Alzheimer’s Association Medicare Advocacy Project National Press Foundation December 6, 2010

Alzheimer’s Disease: By the Numbers

• 5.3 million people with Alzheimer’s disease, including 200,000 people under the age of 65 with the disease • 11 million caregivers • 250,000 children between the ages of 8-18 who are providing care

What We Will Address…

• Key steps to get affairs in order after the diagnosis of a serious illness, like Alzheimer’s disease – Plan how to pay for health care and support – Make a plan to manage health and personal decisions – Make a plan to manage money and property – Plan for the care of dependents, business, and estate – Get legal documents in order

Plan How to Pay for the 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 disbility decisions for individuals with Alzheimer’s disease

Supplemental Security Income benefits

– Means tested program by SSA

Veterans benefits

– Broad array of financial benefits

Plan How to Pay for the 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

Make a Plan to Manage Your Health and Personal Decisions

• At some point, someone else will have to make health care decisions for the individual with dementia • Who will be the decision maker?

• What guidance will be provided in advance?

• How will it be communicated?

– Health care advance directive documents

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.

What are the different 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

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

“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

Default Surrogate Laws

(Family Consent )

• Range/Priority of Surrogates • Scope of Decision Making Authority • Triggers/Pre-conditions • How Disagreements are Handled • But they rarely address the

Unbefriended

Patient

Summary chart: http://new.abanet.org/aging/Pages/StateLawCharts.aspx

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 to all of them

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

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

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

“ 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

Build Protections into DPA

• • • • • • Choose someone you trust Limit gifting powers Require co-signatory on important transactions Require periodic accountings Revokable as long as still have capacity Seek advice of attorney to customize & ensure meets state law requirements

•

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)

•

Other Options

Representative Payee

– If receive SSA, civil service, railroad retirement, VA benefits, these agencies may require an individual to be appointed as a representative payee – Once appointed, the rep payee has authority to manage the relevant income but no any other income or assets.

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

Other Key Planning Considerations

• • • • –

Develop a succession plan of a business

Including power of attorney to run a business and buyout agreements –

Consider applying for other public benefits, if appropriate

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

Prepare a 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 the care of Dependents

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 – “guardian” “conservator” and more

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

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

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”

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

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.