Good Life Workshop Seven Steps to Creating a

Good Life Workshop – Seven Steps to Creating a Safe and Secure Future for Relatives with Disabilities Lifetime Secure Personal Assistance Network (Life. SPAN) Web Site: www. lifespan-wa. org Phone: 425. 883. 9867 E-mail: info@lifespan-wa. org (originally presented in May 2009)

• Ring the bells that still can ring • Forget your perfect offerings • There is a crack in everything • That’s how the light gets in Leonard Cohen

A Day in the Life § YOUR FEARS § A GOOD LIFE

Seven Steps to a Good Life 1) 2) 3) 4) 5) 6) 7) Clarifying Your Vision Building Relationships Creating a Home Making a Contribution Ensuring Choice Developing Financial Security Securing your Plan

Vision • Benefits to you of taking action – – – – Makes general more specific Puts dreams and nightmares into perspective Engages you in discussion with family/others Honors your son/daughter’s personal experience and dreams Helps resolve conflicting views Expands possibilities Clarifies your motivation to others Provides something tangible to rally around • Challenges – Clarifying vision before embarking on technical solutions – Facing three fears • Fear of death • Fear of making a mistake • Fear of opening up

Vision – Where to start 1. 2. 3. 4. 5. 6. Clarify your vision in writing or on tape. Describe a day in the life of your relative after you die. Develop a brief family history. Compose a letter to the future (expressing your innermost wishes and concerns for your relative after you are gone). Involve your relative in this process. Share ideas and solutions with other families. Gordon’s story Take 5 minutes – put pen to paper and describe a good day

Relationships • Benefits to you of acting – Relationships: – – – – Are the foundation of your plan Ensure wishes and dreams come true Reduce loneliness and isolation Connect people with a shared interest Improve mental, emotional and physical health Help with decision making Mediate effect of impersonal human services Are source of potential trustees and guardians • Challenge – Asking – Opening – Believing

Relationships – Where to Start • Personal Networks – – – – Provide continuity of your hopes and wishes Strengthen relationships that already exist Assign and share responsibility with members Ease family responsibility Clarify everyone’s expectations Create a web of support Monitor formal programs and services Kelly’s story Film clip Keep your eyes open for people. Build a list.

Creating a Home • Benefits to you of taking action – – A sense of place Privacy and choice A place to entertain and be hospitable A haven for contemplation and comfort • Additional benefits of home ownership – Control over one’s living environment – Security and stability of tenure – The opportunity to build equity – investment • Challenges – Maximizing choice and influence over one’s living environment – Anxiety about family involvement – Funding, licensing and regulatory restrictions – Waiting lists – High staff turnover – Places to work for staff – not homes – Reduction of social housing dollars

Home – Where to Start • Ask yourself – • Explore options to fit vision – – – – – “Does this option fit our vision? If not, why are we settling for less? ” Personal network as monitors and support Financing Type of ownership and housing Clarify in your will and estate plan Negotiating funding for support staff Selecting compatible support staff Choosing a compatible roommate Making provision for ongoing maintenance Technical advice for construction/renovation Anna’s story Describe what a welcoming home would look and feel like for your relative

Making a Contribution • Benefits to you of taking action – Helping to find belonging and meaning – 2 universal wants and needs of all humans • Key concepts of contribution – – Being human means making a contribution Skill follows passion Accountability and worthiness Work means being accountable for pursuing your potential and finding your place in the world – Philia – building a caring society www. philia. ca • Challenges – Believing that everyone has a contribution to make – Liberating contributions – making space to receive – Ensuring all contributions are made

Contribution – Where to Start • Passion in job #1 – Contributions of the head: things I know, enjoy discussing, listening to, learning or teaching – Contributions of the hands: things I know how to do and like to do, gifts of service – Contributions of the heart: things I care deeply about, love and appreciate, gifts of sensitivity, compassion, presence, joy and acceptance Julie’s story Dina’s story Film clip: Ted’s story Define passion pursuits – – What has my relative taught my family? What is my relative’s greatest accomplishment? What does my relative contribute by presence? What does my relative like doing the most?

Ensuring Choice • Benefits of good decision making for our relatives means – Individual with disability takes the lead – Intuition and feelings are as important as intellectual ability – Their needs are the primary consideration – Options are available and considered – Their tastes, preferences and ability to discriminate are viewed as legitimate – They are surrounded by people they trust who care for them • Challenges – Honoring their choices – Keeping people safe – Creating comfort with risk – something may go wrong

Choice – Where to Start • Three main areas of decision making – Personal care – Health – Financial/legal • Key concepts to developing choice – – Everyone is capable There are many forms of intelligence All methods of communication are valid Trusting relationships are key to assessing capability – Support from friends/family are the first resort – Adult legal guardianship is the last resort • Alternatives to legal adult guardianship – – – – Relationships of support Advocacy Enduring power of attorney Trusts (income and discretionary) Joint bank accounts / Joint ownership Individualized funding Joint decision making (not legally binding in WA)

Choice Life. SPAN examples Review the choices worksheet in the Good Life book. Circle where you are in the process. – – – Where does choice currently exist? Where is choice missing? What can be done to improve choice?

Financial Security • Benefits to you of a will and estate plan: Financial side – How to achieve your estate – Maximize size of estate through planning – Support your vision for your entire family – Provide a separate independent income for remaining spouse Will side: How to dispose of your estate – You decide how estate is distributed versus leaving it to the state – Protect estate of son/daughter with disability – Pay debts, taxes and other liabilities – Avoid: delays in settling the estate, family strife, needless taxation, costly legal challenges and government involvement • Challenges – 50% of all Americans die without a will – Complexity of planning has nothing to do with having a family member with a disability – You won’t get it perfect the first time

Financial Security – Where to Start • Answer logical questions: • Consideration – – – Who are my Beneficiaries? Who will be my Executor? Who do I appoint Guardian of minor children? What type of Trust will I create for my son/daughter with a disability? • Special Needs (maintain eligibility for government benefits) • Income (protects from exploitation and careless spending) – Who do I want as Trustees? – Who will I use as my Lawyer? – DD Endowment Trust of Washington Sue’s story Walk through financial worksheet in Good Life Book – See where you are then seek advice to achieve vision

Securing Your Plan • Benefits to securing your ideas – Keeps components of your vision functioning and connected – Monitors people and institutions you are depending on – Helps prepare for the unexpected – Provides extra eyes, ears, arms and legs • Challenges and disturbing trends #1 Getting started unraveling the mystery – Living with ambiguity and risk #2 External factors – Funding cutbacks – Erosion of human rights – Rationing of health care – Changing tax laws and regulations – Limitations of human services – Evolving worthiness debate

Securing Your Plan – Where to Start • Make a commitment to yourself today – “In the next week I will” • Select 1 to 3 steps today • Check them on sheet • Indicate if you’d like us to check in • We are here to help with – – – Family support and advocacy Future planning advisory services Workshops Creating Personal Networks of Support Sustaining networks and monitoring your plan through a Lifetime Commitment to your son/daughter after you are gone • We want to inspire you to take action

Co - Trustees Programs & Services Personal Support Network Focus Person Vision & Planning With Family & Friends Life. SPAN: • • • Regular contact with your relative Respect family wishes Maintain personal network Advise Trustee(s) Lifetime commitment