ContingencyPlanningCovering the Basics

Adult Programs

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About this BookletEnd-of-life decision making is not a single event that occurs when faced with a critical illness, but rather an ongoing series of choices based on life experiences, support systems of family and friends and health issues.

Individuals with intellectual and developmental disabilities should be allowed and encouraged to articulate their choices throughout the course of their lives, so their wishes can be respected.

This booklet will introduce you to the process of contingency planning and provide resources for doing so.

Disclaimer: Rocky Mountain Human Services and its employees are not legal or financial experts. Any advice or actions suggested in this booklet should be discussed with a qualified professional to assess your personal situation.

Overview

Getting StartedIn the event that you are no longer able to care for your loved one with an intellectual or developmental disability, it will be important for any caregivers to know and understand the needs of your loved one.

Information that should be gathered includes• Contact information • Social Security number and proof of citizenship • Religion• Communication level (ability to speak, read, write, etc.) • Personality traits• Contact information for doctors and other supports• Medical information/needs• Financial information (bank accounts, investments, etc.)• Funeral plans• Medicaid, Medicare, SSI and other benefits (including representative payee

if applicable)• Housing information

What should I do with this information?

Upon gathering this information, it is important that this information be shared with someone you trust.

This information should be updated regularly to ensure an accurate reflectionof your loved one and their needs andskill sets. This will not only allow yourloved one to have their wishes carriedout but also to have their end-of-lifeneeds met, once established.

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nFinancial Planning

Once you’ve gathered your loved one’s financial information, youshould evaluate his or her current situation and create a plan that will help you estimate for and address the future needs of your loved one.

Developing a financial plan will• Provide an estimate of lifetime financial support needed• Protect eligibility for SSI, Medicaid and need-based state services • Fund a special needs trust• Provide for proper title for assets, gifts, bequests and insurance benefits• Trace estate distributions at the death of either or both parents(Source: Hal Wright, CFP. 2007)

? What is a special needs trust?

A special needs trust allows a family to set aside monies to support an individual with intellectual or developmental disabilities while keeping intact eligibility for SSI, Medicaid and state services.

Legal Information

Legal OptionsThere are legal measures you and your loved one with an intellectual or developmental disability should know about and consider having inplace in the event that medical issues arise.

Informed ConsentIt is important to remember that your loved one with an intellectual or developmental disability has the right to be informed of any and all treatments. They have the right to refuse any and all treatment, as well as the right to accept any and all treatment.

Advanced DirectiveWhen a person completes an advance directive (i.e., Cardio Pulmonary Resuscitation, or CPR; Do Not Resuscitate, or DNR) prior to his or her incapacity, that directive stands through a guardianship, meaning if a guardian later needs to be appointed, they cannot change it.

Medical Orders for Scope of TreatmentA Medical Orders for Scope of Treatment (MOST) form should accompany an advance directive. A MOST form doesn’t replace an advance directive, butrather allows the individual with an intellectual or developmental disability to make their decisions regarding end of life and resuscitation known at all treatment stages and transfers from place to place (e.g., hospital to hospital/nursing home).

Living WillA living will is a legal document detailing a person’s desires regarding their medical treatment in circumstances in which they are no longer able to express formal consent.

Did you know?

A healthcare provider has the right to decline your wishes, but they must refer you to someone who will accept and carry out your wishes.

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nLegal Options

If a medical issue arises, a physician will need to speak to a medicaldecision-maker. There is no default hierarchy in Colorado, meaning aspouse or adult child will not automatically be looked to as the decision-maker. Therefore, a proxy should be determined, or if a proxy cannot be determined, a guardian would be needed.

GuardianshipWithout a guardian, health care providers may refuse to “treat and serve an incapacitated adult who does not have a guardian to give informed consent. In addition, without a guardian, an individual may be denied appropriate housing, pension benefits, government entitlements, personal care and social activities.” (Source: Guardianship Alliance of Colorado pamphlet)

Not every individual with a disability needs a guardian. This is a family and/or a court decision. Below are examples of some less restrictive measures.

Medical ProxyThe individual with a developmental or intellectual disability chooses another person to make health care related decisions for them by choice or if they are not able to make decisions/wishes known.

Medical Durable Power of AttorneyThis is a legal document giving someone appointed by the individual with a developmental or intellectual disability the legal authority to make any and all health care related decisions when that individual is not able to. The appointed person is able to then make a broad range of health care related decisions for that individual.

For further information about the roles and responsibilities of a guardian, or for information regarding less restrictive measures than guardianship, contact The Guardianship Alliance of Colorado or a lawyer.

Resource GuideLEGAL

Colorado Bar Associationwww.cobar.org

The Legal Aid Foundation of Colorado1900 Grant St., Suite 1112Denver, CO 80203(303) 863-9544www.legalaidfoundation.org

GUARDIANSHIP

The Guardianship Alliance of Colorado801 Yosemite St.Denver, CO 80230(303) 228-5382www.guardianshipallianceofcolorado.org

Resourcces

FINANCIAL

For financial resources,please contact Glynis Anseth or Tracy Litzenberger at Rocky Mountain Human Services.

RMHS ADULT PROGRAMS

For questions or comments,or if you are interested in receiving assistance to create your own contingency plan, contact Glynis Anseth or Tracy Litzenberger at (303) 636-5600.

For more information:(303) 636-5600www.rmhumanservices.org

Rocky Mountain Human Services9900 E. Iliff Ave.Denver, CO 80231

This booklet was developed by RMHS employees Glynis Anseth and Tracy Litzenberger.