PLANNING FOR THE FUTURE WITH PLANCTX.org Planned Lifetime Assistance Network

THE GOALS OF THIS SEMINAR To educate individuals, families, caregivers and professionals about future life planning issues. To encourage families to develop necessary legal, financial and independent living documents. To assist families to identify resources to fulfill the Life Plan goals. This is actually the seminar that we provide for families. We are sharing this today to help get a better sense of how this information is presented to families who are seeking out information to care for their loved one.

FUTURE LIFE PLANNING Develop a LifePLAN: Inventory of the needs of your loved one with a disability or mental illness Person and family wishes, preferences and goals Locate resources to support the plan Independent Living Financial Legal Identify appropriate people to implement the plan Primary Goals: -Person Centered, self directed services. -Life Planning is about developing and fostering Circles of Support. -A LifePlan is a combination of a guide book, a mission statement, and a biography. -It strives to capture the hopes, wishes, and dreams of both the family and the individual and turn that into a workable reality for the individual. -It serves as a communication tool for future care givers to facilitate a smooth transition when caregivers change. Results in reduced trauma if a change happens suddenly or unexpectedly. Secondary Goals: -Provides education and consultation on resources to meet current needs and future of an individual. -Provides a map for care providers and support staff to work with an individual.

LIFE PLANNING What is a good life? Who will help maintain your loved one’s quality of life? Who will do what you do now? What critical independent living, legal and financial planning can be done?

Life Planning Areas Relationships: friend and family connections Contribution: Doing (work, volunteer, create, cook dinner) and being (caring, attention, acceptance, gratitude, loyalty) Home: Comfort, privacy, continuity, security Decision making: choices, preferences, values, information and options Financial security: Wills, Special Needs Trusts, employment and benefit preservation

THINGS THAT FAMILIES/CAREGIVERS DO… Housing Meaningful day activities Social Connections Healthcare Treatment Programs Financial Resources Transportation Guidance Meals Recreation Monitoring of treatment Conversation Skill teaching Negotiation of a complex world Advocacy Birthdays/Holidays etc., etc. etc. If you were to write down everything that you did for your child the list would be immense so these are just a few examples of some of the types of information that are included in a LifePlan. Assignment: Carry a notebook for one week and write down everything you do for you child for one week.

It is vitally important to plan BECAUSE…

TODAY 80% OF PEOPLE WITH DEVELOPMENTAL DISABILITIES LIVE WITH FAMILY. 65% OF PEOPLE WITH MENTAL ILLNESS LIVE WITH FAMILY.

TWELVE STEPS TO FUTURE PLANNING Step 1: Circle of Friends Build a circle of friends, family and staff to participate in the planning process. The person with the disability should be the center and the manager of the circle. Sometimes this works very well. Oftentimes it is necessary for the family and the individual to be interviewed separately because of conflict or sensitivity of information. Provide examples: -parental view of future planning may be different from that of the individual. -Sometimes the individual does not have a full understanding or accewptance of challenges and therefore might not respond well to factual information.

Step 2: Prepare a LifePLAN to address: friends and family housing work social activities medical care spirituality end-of-life and burial issues. The plan should be comprehensive but flexible. Discuss purpose and scope of each section: Friends and family: relationships are key to a good life. Housing: -Where to live (Home, Apartment, Group Home, etc.) -Why is this important? -Many families do not have a specific idea of where they would like to see their loved on live or have limited information on housing options. Families can no longer be assured that the “state will take care of” their son or daughter. A strong advocate and good information about residential support needs is key. Work: -What is the current and/or ideal work situation? -Have there been any unsuccessful work environments? - A good job match is key. As a surrogate decision maker you want to have all information so you don’t recommend a placement that was unknowingly unsuccessful in the past. Social Activities: -Specific likes, dislikes, and favorites! -Since family members are not around to talk about likes and dislikes it is important to preserve those memories. -This makes a significant difference in the quality of life of an individual. Medical Care: -Coordination of care. Religion: -Maintain preference and access. End of Life and burial issues: -The goal is to make the plan beforehand so that a Best Interest Decision is unnecessary and a Substitute Judgment can be made. Provide short story surrounding DF’s father’s end of life challenges.

Step 3: Write a Letter of Intent This is the family’s opportunity to express hopes and desires for the future of your family member with a disability or mental illness. This helps families provide a summary to send to their other family members or family attorney to indicate that there is a LifePlan on file. Essentially, this expedites notification and response if the primary caregiver/advocate/guardian becomes incapacitated or passes away. Briefly discuss timeframe of probating a will, qualifying for guardianship, etc. Tell story about GR. Guardian becomes incapacitated

Step 4: Power of Attorney/Health Care Proxy or Guardian Decide on a POA, guardian and/or Health Care Proxy as appropriate and discuss your decision with that individual. (A successor guardian and/or advocate should also be named.) Discuss difference between POA/ Healthcare and Proxy Guardian (Limited vs. plenary) -Discuss impact of the Limited Guardianship Law (2006) -Prior to this law it used to be “all or nothing”. Essentially guardianship meant removal of most legal rights. -Since inception this allows the individuals can maintain certain rights and responsibilities and may only need support in certain areas. Regardless of the level of guidance required the supported decision making model is utilized, meaning that the goal is to help the individual make the best decision with assistance. Why does everyone think that this is important? Give Examples of Plenary: R L Give Examples of Limited: P M and/or J D

Step 5: Budget for Future Needs Determine the realistic costs of the plan, taking into account housing, medical, transportation and recreation costs and the cost of hiring a private advocate or guardian if necessary. This involves making a realistic budget taking into account current/future resources, prospective housing choices, social activities, etc.

Step 6: Determine Financial Resources Determine the financial resources that will be available, from government benefits to investments, insurance and real estate that will ensure adequate funds for your loved one’s lifetime. It is always wise to talk to a financial planner to get a basic idea on how long money will last and how monthly government benefits are affected by assets.

Step 7: Prepare a Will Prepare a carefully worded will with the assistance of a knowledgeable attorney who has experience preparing estate planning documents for families of people with disabilities or mental illness.

Step 8: Provide a Special Needs Trust If you did not create a special needs trust in your will, do so now. Again, use an attorney who has significant experience with special needs trusts. “It costs a lot more to fix a mistake than to do it right the first time” There are options if individuals and families do not have a large sum of money to leave to their loved one.

Step 9: Select a Trustee Choose a trustee and successor trustee to manage the special needs trust. Be sure those individuals know and understand the rules and restrictions regarding special needs trusts. TTEE must be very knowledgeable regarding rules of SSA; SSI and Medicaid. Primary goal is to supplement needs without jeopardizing these. Medicaid eligibility will be critical to housing / DDD services. People can work and maintain Medicaid eligibility.

Step 10: Secure Planning Documents Place all estate planning documents, including the LifePLAN, letter of intent, legal documents, birth certificates, medical records, deeds, stock certificates, insurance policies, etc. in a safe place. Distribute copies of appropriate documents to those who will be directly involved in implementing your plan.

Step 11: Meet with the Circle Bring the circle together to review the plan. Tell them where important documents are stored. Share the LifePlan with family and friends so that everyone knows and agrees to their role. Family should not assume that just because they “figured that Aunt Sally would take care of John” means that is exactly what will happen.

Step 12: Review the Plan Review the plan annually or when significant changes occur.

WHERE DOES PLANCTX FIT IN? Support to your family member in the form of regular visits, coordinating services, advocating for quality services Support to other family members in the form of regular communication, alerts to problems, expertise in the disability/mental health service systems and potential benefits.

For More Information Contact: Planned Lifetime Assistance Network of Central Texas PLANCTX 4110 Guadalupe Bldg. 781, Ste. 410 Austin, TX 78751 Phone: (512) 851-0901 Fax (512) 535-419 Email: info@planctx.org