Overcoming Lifes Obstacles Universal Life Stiles L L

…Overcoming Life’s Obstacles Universal Life. Stiles, L. L. C. Person Centered Approaches to a Meaningful and Enviable Life

Today is a gift…. . that is why it is called the PRESENT. Universal Enhancement

An Obvious Correlation “What you do today will determine tomorrow. ” Mahatma Gandhi Universal Enhancement

Valued Experiences Sharing Ordinary Places Making Choices Contributing Respect Growing In Relationships Universal Enhancement

History The history of their lives becomes their future. Cheryl Wacker Universal Enhancement

Quality of Life Construct • Sensitizing Notions: gives society a sense of reference and guidance from the individual’s perspective, focusing on the person and the individual’s environment • Social Construct: used as an overriding principle to enhance an individual’s well being and facilitate collaboration for change at the societal level; and • Unifying Theme: provides us with a common language and systematic framework to apply quality of life concepts and principles University of Minnesota Driven to Discover Universal Enhancement

Fatalism… … a doctrine that events are fixed in advance so that human beings are powerless to fix them (Webster Dictionary) There is a prevailing belief that individuals with significant disabilities cannot have a quality life! Universal Enhancement

The Law of Leaking When benchmarks are achieved and goals are realized to improve quality of life, beware of ‘leaking and straying. ’”. This law states: Improvements in quality of life revert to their original status unless vigilance and directed efforts are exercised. Universal Enhancement

Guardian’s Expectations… …can serve as a self- fulfilling prophecy either negative or positive! Their expectations should not be determined by a diagnosis! It is essential that guardians dream about opportunities for their charge’s enhanced quality of life. Universal Enhancement

The Future “Plan for the future because that’s where you are going to spend the rest of your life. ” Mark Twain Universal Enhancement

You’re the Author When writing the story of your life, don’t let anyone else hold the pen. Universal Enhancement

The Future Is Now How can people have a future - when they don’t have a “present”? Being an active participant in all aspects of one’s life Forming valued relationships Having things of value Universal Enhancement

A Change Of Focus Futures Planning is bankrupt when it focuses on what you want in your future versus what contributions you wish to make… Why are you on this earth? John O'Brien, Ph. D. Universal Enhancement

Worthwhile Only a life lived for others is a life worthwhile! Albert Einstein Universal Enhancement

Life LIFE: IT’S NOT THE SIZE OF THE SPLASH BUT THE JOY YOU FIND ALONG THE WAY NON SEQUITUR by WILEY Universal Enhancement

Later There is no future without a “present!” Universal Enhancement

THE HOPE FACTOR HOPE J 12 J 10 J 8 Realized J 6 J 4 Realized J 2 J 0 Wake Up TIME Universal Enhancement Sleep

Core Q of L Domains Desired states of: Emotional well-being Physical well being Interpersonal relationships Material well being Personal development Social inclusion Self-determination and rights University of Minnesota, Driven to Discover Universal Enhancement

Looking Forward When you get up each morning what do you look forward to? Watching your child take a first step Going to dinner with a close friend Buying a birthday present for your partner Reaching your goal at a Weight Watchers meeting Universal Enhancement

Looking Forward (cont’d) Making reservations for a long needed vacation Tending to the plants in your garden Reading two more chapters of a book by your favorite author What do the men and women you support look forward to each morning when they wake up? Universal Enhancement

The Foundation of Happiness is the foundation in realizing a preferred future. Support people in realizing happiness through Universal strategies: Altruism Relationships Exercises Pets Unfortunately these life experiences are lacking in the lives of many whom we support! Universal Enhancement

Intimacy What would your life be like without an intimate relationship? Intimate: marked by close acquaintance, cherished, dearest, devoted, warm friendship, relating to or indicative of one’s deepest nature. Wikipedia Universal Enhancement

A Perspective On Quality Person The process always starts in the center, with the person. Program The quality of supports for people who rely on human services depends on program design and delivery. System Improving a program's ability to provide quality services and supports is shaped by the organization of the service system. Universal Enhancement

Quality On Three Levels Person Program System Universal Enhancement

What We Know Research suggests a number of ecological characteristics relate to a high quality of life and self-determination in living arrangements: Organizational climate Agency policies and regulations The knowledge, skills and attitudes/beliefs of DSPs The behavior of DSPs The personal capacities and behaviors of supervisory staff and organizational leadership University of Minnesota Driven to Discover Universal Enhancement

Shifting to A New Paradigm What is intellectual disability? Trait Interaction between person and environments Deficit Model Functional interpretation and assessment Statistic Functional interaction between environments Universal Enhancement

Shifting To A New Paradigm (cont’d. ) Resulting changes in services: Ineffectual teaching Quality teaching No schools Separate schools Integrated schools Residential segregation Neighborhoods Custodial care Teaching skills Institutions Group homes Supported Living Universal Enhancement

Shifting To A New Paradigm (cont’d. ) Changing the interaction: Control and coercion Empowerment Dependence Self-definition, personal autonomy, choice Being a burden A person with challenges Eternal child; Transition to helpless adult status Universal Enhancement

Shifting To A New Paradigm (cont’d. ) Changing the interaction (cont’d. ): Fear of person Understanding of full humanness Familial risk Acceptance Affirmation and support Denial of Access to health care Universal Enhancement

Shifting To A New Paradigm (cont’d. ) Changing the interaction (cont’d. ): Idleness Adult Day Program Segregated workshop Jobs Job discrimination Antidiscrimination Supported employment IQ=Restrictiveness Individualized supports Source: Luckasson, R. , Spitalnik, D. M. (1993). Political and programmatic shifts of the 1992 AAMR definition In V. J. Bradley, J. W. Asbough, & B. Blaney, (Eds. ). Creating individual supports for people with developmental disabilities: A mandate for change at many levels. Baltimore: Paul H. Brookes. (In progress). Universal Enhancement

Childhood Experiences Rights of passage for all children: • Selling Girl Scout cookies • Taking music lessons • Running through the sprinkler • Receiving an allowance • Roller skating • Packing a school lunch • Making things for grandma • Learning to whistle • Riding your bike • Pulling a wagon Universal Enhancement

Childhood Experiences (cont’d) • Playing Hide and Seek • Listening to bedtime stories • Attending a story hour • Blowing bubbles • Taking a bubble bath • Riding a pony • Having a sleep-over • Staying up really late • Eating Count Chocula • Flying a kite Universal Enhancement

Childhood Experiences (cont’d) • Having a squirt gun fight • Baking cookies • Playing croquet • Playing in a sandbox • Trick or Treating • Playing in Little League • Dance recitals • Playing Hopscotch • Selling lemonade • Making mud pies Universal Enhancement

Preferred Future Identifying and seeking a preferred future is the essence of a quality life. Universal Enhancement

Take Action! the greener where you water Thegrassisisn’t always greener on the it! other side of the fence……. Anonymous Universal Enhancement

Transition Tran si tion: 1. Passage from one form, state, style, or place to another Universal Enhancement

Evolution of the Planning Process Model Team Medical/Custodial Intra Disciplinary Plan ITP Universal Enhancement Role Patient Focus Physical Infirmity

Intra-Disciplinary Clinical staff defend their territory against intruders. Each discipline has a “professional bag of tricks”, guarded by a discipline representative. Those not holding membership are not allowed to view the bags 'contents. PT Universal Enhancement OT MSW

Intra-Disciplinary Roles Psychologist Special Educator Speech & Language Clinician Dietician Nursing Recreational Therapist Social Worker Occupational Therapist Physical Therapist The individual is dissected - each discipline exacts their part of the person. Universal Enhancement

Puppets Behaviorist Psycholog Job Coach DSP Servi ce Co ordin ator Nurs e Guardian O. T. ian Dietic Language Clinician P. T. In the name of professionalism, we pull the strings of those we support – impairing: spontaneity, self-determination and individualization. The role of the professional is to relinquish control and empower the individual! Universal Enhancement

Evolution of the Planning Process Model Team Medical/Custodial Intra Disciplinary Developmental Inter Disciplinary Plan ITP IPP Universal Enhancement Role Patient Resident Focus Physical Infirmity Skill Acquisition

Interdisciplinary Each discipline completes their assessment, objectives and plans sharing them with other disciplines. Through a process of consensus, the plans evolve into an integrated planning document. Universal Enhancement

Evolution of the Planning Process Model Team Medical/Custodial Intra Disciplinary Developmental Inter Disciplinary Habilitative Trans Disciplinary Plan ITP IPP IHP Universal Enhancement Role Patient Focus Physical Infirmity Resident Skill Acquisition Client Movement to LRE

Trans-Disciplinary If its not illegal, unethical or immoral and the staff are capable of providing the required clinical services ---- DO IT! Speech MSW OT Psych. PT Universal Enhancement RN

Let’s Celebrate The spirit of a Person Centered Plan is more fully realized when celebration is pervasive throughout the process. Unlike the ISP of IPP process where: • horns don’t honk and bubbly doesn’t flow when the person meets their tooth brushing objectives • rounds of applause are not given for achieving the objectives in bed making and hair combing • there is no celebratory dinner when the last two steps in a ten-step task analysis is achieved for vacuuming. Universal Enhancement

Let’s Celebrate (cont’d) Celebration is inspired in the PCP process when the focus person: • saved enough money from their job to go on a 4 day vacation • invited their family over for dinner and prepared the meal • completed 100 hours of volunteer service for three organizations • lost those last 25 pounds • used the public bus to visit friends These are cause for celebration! Universal Enhancement

Evolution of the Planning Process Model Team Medical/Custodial Intra Disciplinary Developmental Inter Disciplinary Habilitative Trans Disciplinary Participatory/ Inclusionary Non Disciplinary Plan ITP IPP Role Patient Focus Physical Infirmity Resident Skill Acquisition IHP Client Movement to LRE ISP Consumer Relations Universal Enhancement

Community Challenge Valued Experiences Promote interdependence among people Growing in relationships Few & restricted Community relationships; few participation memberships; isolation & loneliness; loss of connections; low personal power Discovering & contributing gifts, capacities & skills Low level of Supporting contribution; contribution unrealistically low expectations; deteriorating ability; physical hurt Limited voice; Promoting few options; choice no exit Recognize & develop all human resources Protect integrity Making choices by creatively resolving conflicts Common Experiences Universal Enhancement Accomplishment

Community Challenge Offer valued roles to everyone by confronting limiting beliefs and their historical consequences. Give up stereotypes. Valued Experiences Being respected & having the dignity of a valued social role Common Experiences Negative reputation; prejudiced, inappropriate & limited responses from other people; negative, self-fulfilling prophecies Include all people Sharing ordinary Being separated places and by location, activities, schedule Source: Personal Profile by O’Brien, John and Connie Lyle, Beth Mount, Responsive Systems Associates Universal Enhancement Accomplishment Encouraging valued social roles Community presence

Valued Experiences Growing in Relationships Contributing Making Choices Respe ct Sharing Ordinary Places Universal Enhancement

Get The Drift? My individualized tailored supports help me attain my personal outcomes: • Going on vacation to Disney Land • Having my own cell phone • Spending more time with my girlfriend • Getting a tattoo I do not wish to be employed or volunteer. My support staff cook my meals, clean my home, do my grocery shopping and laundry. These are my “entitlements” as detailed in my Person Centered Plan. Universal Enhancement

Get The Drift? (cont’d) • I have no control with whom I reside. • I have no input as to where I reside. • I attend a day program where coloring , peg boards and mall herding comprise my day. • I am told what to eat by a dietician. • I am treated like a child by my staff. BUT I have attained my Personal Outcomes! Universal Enhancement

Person Centered Defined Person Centered Planning (PCP) is a set of approaches designed to assist to plan their life and supports. It is used most often as a life planning model to enable individuals with disabilities or otherwise requiring support to increase their personal selfdetermination and improve their own independence. Wikipedia Universal Enhancement

Person Centered Defined (cont’d) Person Centered Planning is an accepted evidence based practice in many countries and throughout the world. PCP discovers and acts on what is important to a person. It is a process for continual listening and learning, focusing on what is important to someone now and in the future and acting on this in alliance with family and friends. Wikipedia Universal Enhancement

Person Centered: Consider This • The title “person-centered” is used because those who developed it and used it shared a belief that services tend to work in a “service-centered” way. • The person-centered concept grew out of the critique of the “facility-based services” approach in the US which was central to the development of “support approaches” in the US. • Person-centered planning is designed specifically to “empower” people, to directly support their social inclusion, and to directly challenge their devaluation. • PCP isn’t one clearly defined process, but a range of processes having a general philosophical background, and aiming at similar outcomes. Universal Enhancement

Person Centered: Consider This (cont’d) • In contrast, traditional models of planning have focused on the person’s deficits and negative behaviors labeling the person and creating a disempowering mindset from the start. • The process focuses on discovering the person’s gifts, skills and capacities, and on listening for what is really important to the person (eg Snow, O’Brien, Mount). • PCP pursues social inclusion through means such as community participation, employment and recreation. Universal Enhancement

Driven vs. Centered A debate, if not a controversy, exists as to whether the plans developed for people should be person driven or person centered. Universal Enhancement

Driven vs. Centered (cont’d) CENTERED: An ongoing problem-solving process used to help people with disabilities plan for their future. In person centered planning, groups of people focus on an individual and his/her vision of what they would like to do in their future. Universal Enhancement

Driven vs. Centered (cont’d) DRIVEN: An ongoing problem-solving process used to help people with disabilities plan for their future. In person driven planning, groups of people focus on an individual while proactively guiding them in making decisions regarding their future. The group supports him/her to make informed consent decisions that either realize the person’s vision and what they wish to do in the future or provide options that assure their overall well being. Universal Enhancement

Whose Plan Is It? A Person Centered Plan (PCP), that the focus person is neither able to read or comprehend, serves to defile the meaning and spirit of the PCP process. It is vital that every effort be taken to utilize media and craft the language so the document speaks to the focus person. The PCP outcomes can be commutated through: Videos Photos Audio recording Pictographs (drawings) Pictures from magazines Simplified vocabulary Slides Use your imagination! Universal Enhancement

Person Centered Challenges A key obstacle to people achieving better lives has been the risk of an averse culture that has been prevalent in human services for a variety of reasons. By changing PCP to fit existing practices rather than using it in its original form, most or all of its effects are lost. Unless what is learned about how the person wishes to These principles are reliant live, and where they wish to go in their lives is on mechanisms such as RECORDED and ACTED individualized funding UPON, any planning will packages and the organizational capacity to have been a waste of time design and deliver “support and more importantly a betrayal of the person. services”. Universal Enhancement

PCP Tasks & Tools Universal Enhancement

Who Makes The Decisions? Person-centered change challenges us to learn together with people. From System-Centered Toward Person-Centered Professional control. Professionals know best Delegate work to support staff Shared decisions with person, family and friends Empower support staff to make own decisions Universal Enhancement

Who Makes The Decisions? (contd) Rely on standardized inter Create person-centered teams to solve -disciplinary teams to problems over time generate plans Organize efforts in the Organize efforts in conference rooms for the community to include the person, family and convenience of support staff professionals Take action to follow rules and regulations Reflect together as basis for setting priorities Universal Enhancement

Who Makes The Decisions? (contd) Spend lots of time planning with little time to take action Spend lots of time taking action, with regular times to reflect Respond to need based on job descriptions Respond to people based on shared responsibility and personal commitment Create distance through process Who Is In Control? Share struggle by working together Universal Enhancement

Q of L & Self-Determination Quality of Life relates to choices/decisions made by an individual with intellectual or other developmental disabilities and, with assistance as needed, • has the ability and opportunity to exercise control over services, supports and other assistance • has the authority to control resources and obtain needed services • has the opportunity to participate in and contribute to their communities • has the support including financial, to advocate, develop leadership skills, become trained as a self-advocate, and participate in coalitions and policy-making Acceptance of the right to self-determination on the part of individuals has major implications for self-image, selfexpression, physical and mental health. Taken in part from Paul Wehmeyer, Ph. D. NGSD & University of MN Driven to Discover Universal Enhancement

Selfdetermination Im po rt an ce It Comes Together… De De si r g Co re ed nt e o ro f l Exercise of Control …and changes over time! Universal Enhancement University of MN Driven to Discover

Without the IDT He was admitted to the “institution” at the age of 6 – discharged at 51; followed by 17 years living in a group home. He died at 68; his death being the one and only significant event in his life not voted upon by an interdisciplinary team. Universal Enhancement

Shifting Paradigms OLD Continuum of care Big vs. . small debate Active treatment 24/7 NEW Inclusion/integration is a starting point – not the goal Supported living options Functional supports Universal Enhancement

A La Carte “Let’s see, I’ll have the OT on Monday, hold the PT please. I would also like the job coaching and after my main course, please bring me some counseling. ” There is no need to provide a full menu, if all people want is a la carte. …Derrick Dufresne Universal Enhancement

Shifting Paradigms OLD Continuum of care Big vs. . small debate NEW Inclusion/integration is a starting point – not the goal Supported living options Active treatment 24/7 Functional supports Home-like settings Real homes Work-like activities Real jobs Move people into services Adapt support services Universal Enhancement

Shifting Paradigms (contd) Professionals “Know Best” and make decisions Look to Federal Gov’t. Individualized planning Provider driven Empowerment of individuals and families Support recipient controlled Person-centered planning Support recipient driven Universal Enhancement

r e d supports i When the organization funded tosprovide r n e o and services also holds responsibility todguide and c i t v fashion the person centered plan, o can an inherent o r n e p h conflict of interestebe avoided? t e w hplan conflicts When the lperson centered with the m t ? d o n g r u a f origination’s… n l o i p t n a o staffing and schedules Sh patterns d i r t e a a r physicalpplant design z e i e t s n n financial investment in property a e c g r on rates of o reimbursement s mission, philosophy and values r e p Conflict of Interest? availability of clinical services …is there a conflict? Universal Enhancement

Life in the Community How can you assist the individual to organize and coordinate his or her life to achieve outcomes in a way that others see the person as a “person”? Universal Enhancement

The Three O’s Options –a number of things from which only one can be chosen Opportunities – a favorable or advantageous circumstance or combination of circumstances Optimism – a tendency to expect the best possible outcome or dwell on the most hopeful aspects of a situation The path to a preferred future! Universal Enhancement

Supporting Choices • We do not want to live in poverty. • We want the right to a job in the community. • We want to work regardless of ability. • We want to work for fair wages. • We want to be respected on the job. (from The Bill of Rights, People First of Oregon, 1993) Universal Enhancement

Person Centered Focus Happiness cannot be pursued; it must ensue. It is the very pursuit of happiness that thwarts happiness. Victor Frankl, MD Happiness is an emotion felt in the here and now; it ultimately fades away. Meaning is enduring. It connects the past to the present to the future. Having purpose and meaning in life increases overall well being and life satisfaction, improves mental and physical health, enhances resilience and self-esteem, and decreases the chances of depression. Leading a happy life is associated with being a “taker” while leading a meaningful life corresponds with being a “giver”. Journal of Positive Psychology 2013 Universal Enhancement

Your Futures Plan As you dream about your future, what outcomes do you hope to realize in the next 5 years? Check all that apply Find a mate Get a degree Have a child Lose weight Quit smoking Exercise daily Buy a home Get out of debt Get a divorce Move to______ Rehab my home Quit drinking Universal Enhancement

Their Futures Plan What outcomes do those we support hope to realize in the next 5 years? Check all that apply: Have my own bedroom Choose my housemate Choose where I live Have a mate Get a power chair Make friends Choose my support staff Seizures controlled Have a real job Engage in consensual sex Spend time with family Control my behavior If this were your life, would you want this future? Universal Enhancement

Invest Wisely Dollars spent on services and supports for individuals with intellectual and other developmental disabilities should not be viewed as an expenditure but rather an investment. This investment must have a good rate of return. Will this investment result in the individual being: Employed? Healthy? Safe? Productive? A contributor? A friend? Dollars being paid to an agency that is unable or unwilling to obtain a good retun on investment should be deemed not worthy of the investor's money. Universal Enhancement

Meeting Needs I’m sorry When people but that’s not possible. ask for things that are not I would love to have a available, bird. “professionals” determine the request inappropriate. Universal Enhancement

Life Goals Oh! Now I get it!! I have no: job, money, friends, hobbies, hope……. . That’s why the objectives in my IPP are: Tooth brushing Making a bed Packing my lunch Using the vacuum cleaner Doing my laundry Universal Enhancement

Growing Old When people with intellectual disabilities become elderly and retire, what do they fear will be lost? Their. . . – Attractiveness – Sexuality – Financial security – Friends – Home – Memory One need not fear the loss of that which they do not possess. 10/18/2021 Universal Enhancement

Memories Oh yes, I remember the “good old days” when: I laid on a terrazzo floor for hours I was given only 10 -15 minutes to eat my meals My family dropped me off and never came back I was put to bed at 7: 30 PM whether I was tired or not I was seldom provided the opportunity to go outside Oh yes, those were the days! Universal Enhancement

Wilma Darlene Kuhns Not expected to live, she (Wilma) was placed in the oven to keep warm until the priest arrived. Even as a newborn, she showed a determination which would become a hallmark of her life. Her parents moved to Alliance in 1933 and divorced soon after. Universal Enhancement

Wilma Darlene Kuhns …she took part in school plays and sang despite suffering long periods of weakness, a result of polio as a toddler. After school, she and her friends would walk down Box Butte Blvd to Thielle’s for cherry Cokes and potato chips. …while a sophomore, she had her first date with Dean Kuhns, the man she would marry. Universal Enhancement

Wilma Darlene Kuhns Married life was full of friends… Wilma hosted card parties and bridal showers for her friends and was a member of the Beta Sigma Phi sorority. …. a mother of four children, active leader in Blue Birds and 4 -H. She was a very thoughtful and patient mother who believed there was no greater calling than raising her children. Universal Enhancement

Wilma Darlene Kuhns …many happy Thanksgiving dinners, 4 th of July fireworks… 1967, her husband became paralyzed in a car accident. With her trademark determination… they became partners with their sons in Kuhns Wholesale. She also cared for other children in her home and worked in the nursery at [church]. Universal Enhancement

Wilma Darlene Kuhns She knitted, sewed, crocheted, canned, baked, gardened and always had a book nearby. She brought beauty and wonder into her children’s lives… Wilma was compassionate, generous, and never gave up on anyone, especially herself. In her last years, she continued to show her determination as she struggled with the loss of her independence due to crippling osteoporosis. Universal Enhancement

Destiny is not a matter of chance, it is a matter of choice. William Jennings Bryan Universal Enhancement

Retirement - QOL People with intellectual disabilities seldom express enthusiasm for the opportunities of self-indulgence which accompany retirement. Enjoying long visits with grandchildren Playing golf with “buddies” Nurturing the garden Traveling frequently to scenic places Spending time reminiscing Reading all the works of a favorite author For many people with intellectual disabilities, there is nothing to retire to or from! Universal Enhancement

Institutional Dreams What dreams are dreamt by those who reside in institutions? Universal Enhancement

Dreams The lack of dreams makes each day hard work! Universal Enhancement

Futures Driven ISP’s Futures Plan To improve the quality of my life, I would like to: • Have more visits to my mom’s home • Volunteer at the Fire Dept • Get my own dog • Be seizure free Universal Enhancement

Futures Driven ISP’s (cont’d) Individualized Support Plan The Regulatory gods are not interested in whether I have more visits to my Mom’s house. This will appease them: ob Given three on a jec Asteps a n tiv sse n ssm uanegotiate riser, es Bob will l Data en Collec the steps, utilizing a ts tion s s s e e l u r d cane, in aogperiod of 45 sche Anecdotal notes Pr otes seconds. n s Team meeting Universal Enhancement

Futures Driven ISP’s (cont’d) The aspirations, dreams and preferences of people must serve to drive the ISP process. In meeting the non-negotiable requirements of the “Regulatory Gods”, we must first meet the “nonnegotiable” requirements of those supported! Universal Enhancement

Client Weekly Schedule Name: Jerry Date Established: 12/15/02 Universal Enhancement

A Futures Plan Comes to Life Sunday Monday Tuesday 1 2 Wednesday Thursday 3 Friday 4 5 8 9 10 11 Give blood at 6: 30 a Health work: Red Club Cross blood 5: 30 p car oil drive change BP Oil 15 9: 00 a Easter Seal fund raising walk. Meet at Courthouse 16 17 Vacation day. Work in garden; plant annuals. 22 24 Vote before Work, at Edison Sch. on Oak Dr. 29 30 Make no Pay bills. commitments. Pick up sleep in! cleaning dry 18 25 6: 30 a Health Grocery club shopping Meet Diane for lunch-Subway 7 10: 00 a Take cat to Vet. Buy special cat food 13 Call AAA for Get hair cut vacation of So. Dakota after work maps Grocery shop 19 Grocery shopping Pick up paint Write thank youchips for LR letters for b. d. 23 Call kids in Ind. & North Car. 12 6: 30 a Health club. Go antiquing Pay bills 6 Get cash at ATM for weekend 6: 30 p Dinner, Send sympathy 6: 30 a Health Grocery card to Carol. Club shopping Parents' MY Birthday! anniversary Return library books Call kids in Indiana & North Carolina Saturday 14 Attend morning services at Synagogu e 20 21 Blue Jean Day Visit Jean at St. at work; $5 Joseph Hosp. donation Take pants to tailor-alter. 26 27 Pick up 3 Videos after work; Speed, Jade, Thin Red Line 28 Meet with attorney re: will. Bob & Linda for dinner Life's everyday activities reflect the realization of a preferred future. . Universal Enhancement

Measurement Intelligence Quotient: The score reveals the individual’s perceived value. A quotient conveys the extent of an individual’s right to be treated like a “normal” person. Our success in increasing the quotient purports a diminishing of defect. Universal Enhancement

Measurement (cont’d) Skill Acquisition: Conceived from the premise that individuals with intellectual disabilities must prove themselves to have a reasonable life. Through the acquisition of skills, the individual validates his/her worthiness to proceed to the next “least restrictive environment”. the focus of the measurement is the acquisition of skills that are neither valued or relevant to achieve a quality of life. Universal Enhancement

Objectives Not everything that counts can be counted; and not everything that is counted counts. Albert Einstein Universal Enhancement

Measurement (cont’d. ) Regulatory Standards: Emanating from political, legal and fiscal concerns, typically regulatory measurement is motivated by a societal need to establish accountability and to provide assurances of fiscal prudence. Regulatory standards tend to be ideologically paternalistic in nature structured to “protect the less fortunate”. Community Participation: Measurement in this particular domain tends to be influenced by normative expectations. That is, a “normal life” is one that can be measured by trips to the library, attendance at church, deposits at the bank, or shopping trips. Measurement in this domain embraces the importance of “humans doing”. Universal Enhancement

Measurement (cont’d. ) Production Rate: The American work ethic is the driving force for this measurement. Productivity in the work setting achieved by people with intellectual disabilities is the primary factor in determining the individual’s emancipation from work activity centers and sheltered employment. It is through the individual’s ability to capture (achieve) normative standards of production that he/she becomes whole (fully productive). Relationships: People (others) and the roles they fulfill in the lives of people with intellectual disabilities is the subject of this measurement. Universal Enhancement

Measurement (cont’d. ) Relationships (cont’d): People whose roles extend beyond that of family or paid supports obtain the relationships of preference. Neighbors, the mail carrier, colleagues at work are all to be counted. Satisfaction: Soliciting from the individual or their representative, an expression of their feelings towards predetermined indicators of quality comprises this measurement. Implicit within this measurement is the elusive concept of happiness. What we measure affirms what we value! Universal Enhancement

Elements of Future Planning Two things are needed in the futures planning process… A blank piece of paper. . . and an open mind. Universal Enhancement

Think Outside the Box Supporting others in realizing their preferred future is a creative process Universal Enhancement

Limiting Creative Behavior Supporting others in realizing their preferred futures, requires creativity. Limiting factors: Stress Self doubt Routines Fear Ego Beliefs Don’t give up—we must persist! Use creative approaches to support others in improving the quality of their life. Universal Enhancement

Anecdotal Notes Why is it required that staff make notations in the records of people receiving support? What does the note communicate about the relationship of the staff with the person who is the subject of the note? • What is the “value added” benefit of the note? • How will the note be used to improve the person’s QOL? Universal Enhancement

Anecdotal Notes (cont’d) • What would be the result if the note was not written? • Is the note written in Universal Language? • Is there a hidden or subtle message the staff is trying to communicate unrelated to the referenced individual? • If the person who is the subject of the note read it, would the staff feel comfortable? • How would the staff feel if they were the subject of the note? Universal Enhancement

Anecdotal Notes (cont’d) • Does the note merely imply that the person was “compliant” (e. g. slept through the night, participated in scheduled activities, completed assigned chores)? What is your organization’s response to the above questions? What corrective action, if any, needs to be taken regarding the recording of notes? Universal Enhancement

Chronological Notes 12/26 Lucy had a good evening with no problems-laid on sofa all evening and watched TV. 12/27 Ate well today. A little bit on the lazy side. She was good and stayed to herself. Started her period. 12/28 Refused her medications, said they made her dizzy and gave her headaches. She went to bed early 5: 00 p. m. and was generally compliant. 12/29 She was good this morning, followed her schedule. She ate her breakfast and performed her daily chores. 12/30 Lucy did all her programs without prompting. She slept well during the night and did not roam the house. Universal Enhancement

Chronological Notes (cont’d) 12/31 Lucy took her medications and is in good mood. Ate all her dinner but refused liquids. 01/01 Quiet today-no problem. She said she was bored today because there was no work to do at the workshop. 01/02 Slept well last night. She got herself up this morning. She showered and got dressed. 01/03 Lucy seems to be doing fine-ate breakfast, did chores, and got ready for work. 01/04 In a bad mood, refused to do chores. Wanted to call boyfriend. I explained that it was too late and no calls can be made after 9 PM. Universal Enhancement

Points To Ponder We need to begin with an understanding of what is required for the pursuit of happiness. Trap of current system--we determine how people can be safe before we look at what they require to be happy. What is the relationship between safety & happiness? Person centered planning does not relieve us of the obligation to address issues of health & safety. Universal Enhancement

Points to Ponder (cont’d) Choice making is not a solitaire activity; it evolves out of discussion - both pros and cons. What most people want is modest. The desired outcome is a life that makes sense to the individual. Universal Enhancement

Points To Ponder (cont’d) We have historically been more efficient in providing people for services than services for people. The future is not designated by great events, but by the small things people do wherever they are. No contribution is too small. Beth Mount Futures planning is not better than individual “habilitation” planning, nor does it take the place of traditional planning activities. The results of the futures planning process should be integrated as much as is appropriate into the focus person’s ISP/IHP. Universal Enhancement

Points To Ponder (cont’d) How each person wants to live should be consistent with how they are living We must learn how the person wants to live through asking and listening Planning for a meaningful future does not result from hierarchical structures controlled by rational argument among experts who find pre-existing answers by standard examinations Universal Enhancement

Points To Ponder (cont’d) Personal futures planning helps the professional to change from the superior role of expert to a more humble role as a partner The primary focus of the Futures Planning process is to negotiate needed organizational changes to remove barriers that may stand in the way Universal Enhancement

Ensuring Success A successfully implemented plan includes the following criteria: The people forming the plan have shared appreciation of the focus person’s abilities. With this, the group can focus on opportunities in the face of obstacles. People who plan together have a common understanding of a future that is very specific to the focus person and their community. Universal Enhancement

Ensuring Success (cont’d) The group includes a “community bridge-builder” -- a member of the community or a paid person who works at building connections to the local community. At least one key agency involved is committed to organizational change. Management is willing to make significant changes in response to these findings. Universal Enhancement

Ensuring Success (cont’d) The focus person and a group of people closely involved with them, meet regularly to review new strategies and make commitments to act. The group includes a strong advocate or family member who takes a leadership role in continually representing the interests of the focus person. Universal Enhancement

Ensuring Success (cont’d) One or more members of the group should help the focus person to make connections with the community. Look outside of the group, to family, friends, neighbors and community resources, for connections by which the focus person can become more involved within the community. It’s Never Too Early, It’s Never Too Late- Beth Mount Universal Enhancement

Guiding Principles… . . for person-centered planning: Individual choice Personal Freedom Self-Discovery Personal Strengths Respect for the Individual Personal Success Individual Satisfaction Tailored Design Universal Enhancement

Your Future Universal Enhancement

Transition Is… A concept to help parents and students prepare for postschool life A process to make connections to achieve long-range goals A plan focusing on postschool outcomes which results in accountability by the school system for the student’s success Universal Enhancement

Post School Outcomes Education: Community College or University u. Adult Education Classes/GED u. Continuing Education Classes u. Technical/Trade School u. Vocational Training u. Apprenticeship u Universal Enhancement

Post School Outcomes (cont’d) Employment: Competitive Employment Supported Employment Sheltered Workshop Volunteering Universal Enhancement

Post School Outcomes (cont’d) Residential: Independent Living Supported Living With Parents or Relatives Group Home Universal Enhancement

Building Circles of Support There are three keys to forming and maintaining circles of support: Focus on an individual to generate a vision. Encourage and allow the focus person to develop his or her own vision and work with the person to achieve it. Work with interested friends, family and other individuals who care about the focus person. Universal Enhancement

Planning Perspective Universal Enhancement defines itself from the person’s strengths and interests. Quality service results from a person-centered perspective. Consider the big picture and help the person learn more and have greater opportunities to develop their interests. This is the goal of planning in any environment. Universal Enhancement

Plan Reminders Be sure that the plan you develop is realistic for the skills and capabilities of the person and the resources of the community. Don't be trapped by words and objectives that have nothing to do with living in the community. Keep in mind the big picture for the person at all times. Universal Enhancement

Characteristics… … of person-centered plans: Focuses on individual choice and control Responsive to questions Completed by the individual, staff and family members who know the person Significant issues addressed Universal Enhancement

Characteristics (cont’d) Has clearly identified priorities Is non-intrusive Is person centered Requires knowledge of the person by all providers of support Incorporates all aspects of a person's life Focuses on relationships and community ties Universal Enhancement

Characteristics (cont’d) Considers real life in the community Integrates recommendations that blend need for support and a full life Uses understandable language Universal Enhancement

Determining Priorities Priority supports should be selected from a range of options to reflect the individual's full day: Is there a behavior that limits the individual's ability to make and keep friends? Can the individual improve in their ability to care for intimacy needs? How can the individual increase access to local community resources? Universal Enhancement

Determining Priorities (cont’d) How can the individual increase their ability to handle money? How can the individual improve their physical health? How can the individual increase their ability to make choices and more fully exercise rights? What can the individual do to increase their opportunities to make friends? Universal Enhancement

Person-Centered Services Who has the role of assisting the person to utilize a network of providers, obtain appropriate services and supports, learn, grow and become part of their community? Do we need a Support Coordinator? Universal Enhancement