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:

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.