How to have the conversation about decision-making options Helping older adults and people with disabilities discover what options are the best fit for them

Today we will talk about: Facilitating conversations at these trigger points: Advance planning before there is a concern or crisis Recognizing and responding to concerns before there is a crisis Making decisions during crisis Post-crisis—what do we do now? Techniques to help individuals and families self-assess their decision-making support needs Today we will talk about:

Techniques to help self-assess support needs What kinds of decisions does the person already make successfully? Are their decisions with which the person has difficulty accessing information or understanding their options? Are their kinds of decisions that the person does not have significant experience making? Is the person likely to develop or regain capacity which could impact decision-making? Techniques to help self-assess support needs 1) There are many decisions that people routinely make on their own in different areas of their life. Even when a person may want or need help with one or more kinds of decisions, that does not mean they are not capable of making any decisions. One strategy to help the person/family identify and recognize strengths is to have them list things the person routinely make decisions on successfully in broad categories: Health (eating, exercise, physical health care); Money (working, what they spend money on, saving money); Home (where I live, who I live with, what I like in my home); Service systems (hiring help, programs I am in, content of my care plan); Other (relationships, transportation, hobbies and activities). 2) Sometimes an individual does not have any trouble making a final decision, but it can be difficult for them to gather and filter information and compare options. Many systems and processes can be complicated and difficult to navigate for anyone. Even simple tasks can become daunting (e.g. navigating insurance coverage, navigating through automatic phone system menus, web-based interfaces, asking public benefit questions) especially if customers are expected to self-serve with unfamiliar or infrequently used technology or the person has functional limitations that impact their ability to fully interact with the system (hearing or vision loss, need for extra processing time etc.). 3) No one is an expert in all things. We all rely on others’ experience and knowledge to help inform our own decisions. We also need practice to make better decisions. If someone has never balanced a checkbook before, that doesn’t mean they can’t balance a checkbook. Families may believe that a “poor” decision or hesitancy to decide is a sign of incapacity and a need for someone other than the person to make those decisions for them, when it may in fact be just a lack of experience. Identifying decision areas to which the person does not have experience making decisions frames those areas as opportunities for learning and practice, rather than deficits in ability. 4) People can learn and gain skills throughout their lives. Young adults with disabilities need practice and experience to develop decision-making skills. Decision-making can be habilitative—practice can help you keep, learn, or improve skills and functioning for daily living. Sometimes changing pain levels, health conditions, and acute incidents (like strokes) may temporarily effect decision-making capacity but that capacity can be fully or partially regained (rehabilative).

Techniques to help self-assess support needs With what kinds of decisions does the person want support? Are there decisions with which the person does not want any support or assistance? What decisions do family members or others believe the person needs assistance with and why? Techniques to help self-assess support needs Having the person identify what support they want and what they don’t want is an important strategy to keep the focus centered on the person. Family members may have observations that indicate a decline in decision-making capacity. However, even dramatic changes may not mean that the person is incapable of making their own decisions (it may indicate a need for additional support). For example, increased time needed to make decisions is not necessarily a sign of decline in decision-making ability.

Who provides decision-making support? Support networks can include friends, co-workers, community members, professionals, family members, or others. 01 People should self-assess who is close to them. Who is present and involved in their daily life? (may or may not be family members). 02 Even if a person has a will, POA, advance directive, etc. that doesn’t mean that there is no room for an SDM agreement. 03 Who provides decision-making support?

Who provides decision-making support? Role(s) current network of supporters willing to have now? Role(s) current network of supporters want to have in the future? What life changes impact Supporters availability or willingness to continue support at current or increased levels? Re-evaluate who the person wants to provide support Re-evaluate whether the person want/needs more or less support Who provides decision-making support?

Common triggers for decision-making conversations Advance planning before there is a concern or crisis. Especially when initiated by the person, this offers the best opportunity for the person to express their wishes Recognizing and responding to concerns before there is a crisis The person, their family, or others may sense changing abilities. Getting as much input, direction, guidance from the person before it is needed can help when action is needed. We’d like 90% of conversation to occur here, but reality is different Common triggers for decision-making conversations

Common triggers for decision-making conversations Making decisions during a crisis: Many consequential decisions that must be made in a short amount of time. Person unable to make or contribute to decisions during the crisis? Who is assuming new or additional responsibilities, how much, how long? How do these additional responsibilities impact other parts of the helper’s daily routine and life? Is this sustainable? Is the person’s decision-making temporarily affected or more permanently, and by how much? don’t want people to think that guardianship is the only answer if you are in crisis A hospital discharge process is a good example of forcing decision-making during a crisis.

Common triggers for decision-making conversations Post-crisis—what do we do now? Should we revisit or reverse actions we took in response to acute crisis? How do we manage, continue, and improve support now that the immediate concern has been addressed. Going forward, how do we make sure choices and person is being honored? Common triggers for decision-making conversations Want staff to know how to have to these conversations no matter where someone enters the conversation, and to understand that they can undo or change arrangements (reverse or further limit a guardianship, change POAs, update SDM agreements, pursue a limited or full guardianship) as their situation changes.

Discussion How can you have conversations about decision-making options in your role? Folks who have case managers in Family Care, where do you see the ability for this conversation to occur within the care planning process? Folks who are IRIS Consultants, where do you see this type of conversation occurring as you are working with individuals as they developing their plan?

Current formal tools for people who need help with decisions Release forms Person signs release forms authorizing a specific person(s) access to certain kinds of records (health, financial, etc.). Some release forms may allow a person to select certain records to be released while retaining privacy over others. Some release forms may provide one-time or time-limited access to records, others releases may remain in effect in perpetuity. Supported Decision Making agreements (Wisconsin) Person makes all their own decisions. Person identifies area of the life in which they want support, identifies a Supporter(s) to help them gather information, compare options, and communicate their decisions to others. The Supported Decision-Making agreement outlines what types of decisions the Person wants support and the role of the Supporter. Agreement can be changed or stopped at any time by the Person or Supporter. Representative payee The Social Security Administration (SSA) appoints an individual/organization to receive SSI/SSDI benefits for a person who cannot manage or direct the management of their own benefits. To change a Representative Payee, the Person must complete an application process with the SSA. Power of Attorney, medical proxy Formal legal arrangements that permit others to act on the Person’s behalf. Powers of Attorney (POA) designate another (a POA) individual to make certain decisions (generally health care or financial) on the Person’s behalf. POAs can be set up in different ways. Some POAs are activated only when a person is incapacitated. Or a POA can be written so an individual other that the Person is always the designated decision maker in certain areas. Medical Proxy documents appoint a proxy/agent to express a person’s wishes and make health care decisions for the person if the person cannot speak for themselves. Limited or Full Guardianship Transfers some or all decision-making authority from the Person to a court-appointed Guardian. Once guardianship is granted by the courts it is difficult (and costly) to modify or reverse the guardianship; any changes must be made through a formal court process. Current formal tools for people who need help with decisions Less Limiting More Limiting Repeat of a handy chart outlining decision-making support options in Wisconsin.