ASD AND LIFE TRANSITIONS Hard Lessons Learned and

ASD AND LIFE TRANSITIONS Hard Lessons Learned and Taught as a Person-Centered Planning Facilitator Cheryl Ryan Chan, presenter

Who I Am • • PCP facilitator, introduced in 2011 to the PCP world, trained in Toronto & NH, now developing a practice. Mom to a 23 year-old severely impacted by autism. Marketing, Development and Social Media strategist by trade. Community activist, networker, public speaker. Who I Am NOT • • • An educator or education specialist. An ABA specialist. An advocate. A paid representative of any organization, company or product. An attorney. You cannot hope to improve the world without first improving the individuals. To that end, each of us must work for our own improvement and, at the same time, share a general responsibility to all humanity; our particular duty being to aid those to whom we think we can be most useful. – Marie Curie

Why I am doing this • Seeing regular patterns of lack of preparedness in clients who are preparing to transition to adulthood. Skills are being taught without consideration for sustainability, safety, and other micro skill-sets that are critical building blocks to mastery. • Individualization is still not entirely practiced – skill sets are being taught that are not appropriate to the actual anticipated future environment. • Parents are struggling to understand the importance of a support system for their child, outside of themselves; the concept is being treated as an option or “nice idea” – not a component of success. • By arming educators and parents with the knowledge of what I’ve observed, hopefully some can avoid the same issues!

What is PCP? Person-Centered Planning is a process in which an individual develops a plan that defines a vision for a future event or situation, and creates actionable items to achieve that vision. The process includes helping a person first identify a group of loved ones and others with resources and skill sets the person can draw upon for support through and past a transition into adult life.

• Most common transitions in my PCP practice have included: Approaching age of transition planning into adulthood (ages 14 -20) • Moving out of the educational system and into the adult world, with or without state or federal supports (ages 18 -22) • Moving out of parents’ home and into semi to full independent living situation (ages 25 +)

What research is showing “As More With Autism Near Adulthood, Clues To Success Emerge” http: //www. disabilityscoop. com/2015/05/14/as-autism-adulthood-clues/20299/ According to findings from a new study presented in May, 2015, at the International Meeting for Autism Research in Salt Lake City: “The ability to do everyday, self-care activities like bathing, cleaning and cooking trumped other factors like symptom severity and intellectual functioning “Significantly, those with the highest self-care skills — whether as adults or in childhood — were most likely to maintain employment, work more hours and need fewer supports on the job, researchers said. “Conversely, the study found that adults with autism who had the most difficulty keeping a job were those who exhibited self-care abilities as children that were significantly lower than their IQ. ”

What research is showing Study: Nearly 1 In 3 With Autism Socially Isolated http: //link. springer. com/article/10. 1007/s 10803 -013 -1833 -8 “Young adults with an ASD were significantly more likely to never see friends, never get called by friends, never be invited to activities, and be socially isolated. Among those with an ASD, lower conversation ability, lower functional skills, and living with a parent were predictors of less social participation. ” Study: Characterizing the Daily Life, Needs, and Priorities of Adults with ASD “Consensus among most reports is that the majority of adults with autism spectrum disorder (ASD) have poor outcomes in terms of independent living, employment, and friendship/social engagement. In a recent study by Pellicano and co-authors (2014), individuals with ASD and their families indicated that future priorities for autism research should lie in practical areas that make a difference in daily life. This study replicates and extends those findings from the adult perspective. ” K. Gotham 1, A. R. Marvin 2, J. L. Taylor 3, Z. Warren 1, C. M. Anderson 4, P. A. Law 5, J. K. Law 6 and P. H. Lipkin 7, (1)Vanderbilt University, Nashville, TN, (2)3825 Greenspring Avenue/Painter Building 1 st Floor, Kennedy Krieger Institute, Baltimore, MD, (3)Vanderbilt Kennedy Center, Nashville, TN, (4)Kennedy Krieger Institute, Baltimore, MD, (5)Congo Protestant University, Baltimore, MD, (6)Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD, (7)Pediatrics/Neurology and Developmental Medicine, Kennedy Krieger Institute/Johns Hopkins School of Medicine, Baltimore, MD

It’s not news… Social Skills Hamper Job Hopes For Adults On The Spectrum http: //www. disabilityscoop. com/2010/07/13/autism-employment-2/9326/ “The lack of social skills inherent in the autism diagnosis means that a job interview can be the ultimate buzz kill for an otherwise highly qualified applicant, experts say. As a result, studies indicate that fewer than 15 percent of adults with autism are competitively employed. ” Daily Living Skills: A Key to Independence for People with Autism https: //iancommunity. org/ssc/autism-adaptive-skills “There are certain skills that these kids are not given through the high school, and it's difficult to transition from high school to independent living with this huge section of training missing. ” Sexual Knowledge and Victimization in Adults with Autism Spectrum Disorders http: //www. ncbi. nlm. nih. gov/pmc/articles/PMC 4131130/ “Individuals with ASD obtained less of their sexual knowledge from social sources, more sexual knowledge from non-social sources, had less perceived and actual knowledge, and experienced more sexual victimization than controls. ” Learning Daily Skills Prepares Kids With Autism for Adult Life http: //consumer. healthday. com/cognitive-health-information-26/autism-news-51/learning-daily-care-skillsprepares-kids-with-autism-for-adult-life-699193. html Those who can clean house and make meals more likely to be employed, study says.

Worst-case scenarios: October 2015: “Man arrested for alleged luring of children in Radnor” A Philadelphia-area man with autism is being held on $100, 000 bail for talking to some children. "He admitted he knew right from wrong, " said Detective T. J. Schreiber at a Thursday afternoon news conference, referring to his conversation with Lee after his arrest. Concern #2: Did Daniel have the skills to understand the officer during the interview? Concern #3: Did Daniel receive training around approaching children? Concern #1: Was police officer properly trained to recognize disability and/or seek assistance from someone who could help interview? SOCIETAL/SYSTEMIC PROBLEM “Daniel’s mom said that she will teach Daniel that what he did was wrong. ” http: //www. poconorecord. com/article/20151101/OPINI ON/151109981/101041/OPINION http: //articles. philly. com/2015 -10 -24/news/67679950_1_daniel-lee-children-woods

Worst-case scenarios: a recent interaction with a client Family had developed a detailed plan to teach 27 year-old son how to take public transportation to his workplace. It involved multiple members of his Circle of Support, and success was anticipated! Me: Todd, if you are walking to the train at the train station, and a pretty girl walks up to you and says ‘Can you help me? I need 60 dollars and I need you to come with me to look at my car, there’s something wrong with it’ – what do you think you will do? Todd: ‘I will give her the money and go with her to her car. ’

Components of a PCP PATH Developing a vision Identifying & inviting a Circle of Support Moving the vision into positive & possible Identifying ways to build strength Listing action items in time increments, with the “who” and “when”

1 Identifying and inviting a sustainable “Circle of Support”

Building a Circle of Support ar? mili fa und so this oes D “I’m terrified, I don’t know who’s going to take care of my child when I’m gone!”

Identifyinga “Circle of Support” in the PCP process

Identifying a “Circle of Support” in the PCP process You and I Individuals with ASD Dr coworker trainer Workout buddies sisters cousins coworker Aunt & Uncle coworker cousins Staff Teachers Friend Faith community BFF Friend coworker Parents siblings spouse Friend Book club neighbor Friend Teammates counselor Study group Doctors Social Worker Case Manager

Building a Circle of Support Re-thinking the Barriers The Barriers “I don’t want to bother people” “this person is really busy, so they probably won’t come” “they live too far away” “I’ve never had a conversation with that person” “I’m graduating so they won’t have anything to do with me when I’m gone” “If I ask them to help, they might not want to” You have nothing to lose and everything to gain by inviting It’s not up to you to decide if they’re too busy; let them decide People can participate via teleconference if they live far away Making assumptions about the willingness of others to help will continue to isolate you. (for parents) This is not about you, this is about your child – he/she needs supports and you won’t be able to provide all of them, forever. The PATH meeting will help people identify ways to help!

Building a Circle of Support Re-thinking the Barriers You have nothing to lose and everything to gain by inviting. It’s not up to you to decide if they’re too busy; let them decide People can participate via teleconference if they live far away. Making assumptions about the willingness of others to help will continue to isolate you. (for parents) This is not about you, this is about your child – he/she needs supports and you won’t be able to provide all of them, forever. The PATH meeting will help people identify ways to help! What happens when they do The PATH meeting will help people identify ways to help! It brings families together. Stress and anxiety are reduced for both the individuals and parents. Parents are better able to manage the “big picture, ” resulting in better outcomes. Individuals become empowered. New friendships are formed.

Lessons Learned & Taught about Circles of Support Parents cannot manage their adult children’s caregiving needs forever fostering relationships that will sustain their children is one of the most important things parents can do People are honored to be asked to help A Circle of Support allows caregiving to be shared, not the sole responsibility of 1 -2 people; this helps people enlist & commit Circles of support can adjust over time and need to be monitored. Regular, planned gatherings of members can help ensure sustainability

Wha Circle of Support Building at we oft en hea r: “I couldn’t believe the people who came, and I’m so excited about the things they’re going to do for us!”

2 Identifying ways to build strength (and maximize preparedness)

“Tell me about your vision for your future” Where I’ll live What kind of house I want Who will live with me What kind of work I’ll do What activities I’ll do

Grounding in the NOW

TYPE Identifying ways to build strength using the PCP process PEOPLE KNOWHOW (skills) SYSTEMS WELL-BEING HAVE NEED

TYPE NEED PEOPLE Identifying ways to build strength using the PCP process HAVE Parents Peers Counselor Job trainer Rep payee KNOW-HOW (skills) Small income with SSI, P/T job Budgeting skills Ride a train Personal safety Using microwave cooking lessons IEP Transition specialist at school SYSTEMS Day program WELL-BEING Workout equipment at parent’s house Gym membership Counselor under parent’s insurance Continued counseling Behavior plan Adaptive behavior skills

NOW WHAT? How to apply the things learned in your PCP to your IEP or ISP.

For How to apply the things learned in your PCP to your IEP or ISP: break it down each piece of the vision, what skills are needed to maximize independence? continue progress? assure safety? build self-esteem? Can these skills be worked on now? How? Who will help?

Break down your goals into small increments and make sure you’ve covered key questions: Goal: Independence with meals to max independence: need to be allowed to practice at home and/or a safe environment Identify How to apply the things learned in your PCP to your IEP or ISP: break it down location(s), overcome barriers To continue progress: need to perform the task regularly, and have a plan to add to the task analysis until max level of mastery is achieved. Parents need help to develop the teaching plan, training to implement it, help from Circle members to generalize it to other spaces Home support, parent training, time commitment

Break down your goals into small increments and make sure you’ve covered key questions: Goal: Independence with meals Assure safety: perform a safety assessment, by having person participate Build self-esteem: help person decide on menu, shop for ingredients; invite others to come to dinner, allow person to serve meals; heap praise; provide a tangible reward How to apply the things learned in your PCP to your IEP or ISP: break it down Circle members can come to dinner, take person shopping, take turns helping with menu

How to apply the things learned in your PCP to your IEP or ISP: match it up Be true to the vision and match your IEP/ISP goals to the actual intended environment. Goals can sound the same but look very different, depending on what the future looks like.

Match up the skills with the anticipated future environment Vision Live in apartment with roommate Skills needed How to apply the things learned in your PCP to your IEP or ISP: match it up Negotiate chores & house rules Respect privacy & property Respond to landlord Pay bills Laundry Cooking Grocery Shop Transportation Phone skills Emergency response Basic home maintenance

Match up the skills withthe Match the skills with the anticipated future environment anticipated future Vision Live in a group home Skills needed How to apply the things learned in your PCP to your IEP or ISP: match it up Travel safely with others Prepare food and eat with others Respect privacy & property Share common areas and property Limited bathroom time Ask for help Ask for privacy Follow a schedule Tolerate diverse activities Adaptive Behavior Leisure time management

Match up the skills withthe Match the skills with the anticipated future environment anticipated future Vision Have a part-time job Skills needed How to apply the things learned in your PCP to your IEP or ISP: match it up Time management Responding to authority Understanding break time Communicating concerns/asking questions Following written instructions Signing paperwork Budgeting Transportation Appropriate clothing

Match up the skills withthe Match the skills with the anticipated future environment anticipated future Vision Participate in Community-Based Day Services Skills needed How to apply the things learned in your PCP to your IEP or ISP: match it up Travel in groups Be ready to leave on time Identify their name (for labeled items) and personal items Follow directions Introduce oneself Indicate they need help Understanding activity schedules Self-calming Leisure activities

How to apply the things learned in your PCP to your IEP or ISP: match it up This is where you can present a person’s vision and goals as defined during the personcentered plan; show the team what the hope for the future is, then spend the time with your school or program to match up the skills they need in that environment.

Match up the skills with the person’s own, personal anticipated level of “mastery” How to apply the things learned in your PCP to your IEP or ISP: match it up Teach to the norm, not to perfection! Revisit what goals are being worked on, and reassess what the expectation is for “mastery. ” Reprioritize, because the clock is ticking!

How to apply the things learned in your PCP to your IEP or ISP: think in “footsteps” “I’m going to learn to get on the train and get off the train at the place where I work. ” “footsteps”: visualize this activity. what could happen on the way to the bus, inside the bus, and after getting off the bus before arriving at work? What do we need to teach to cover these scenarios?

Skill Needed Boots to the ground: Real examples of what families have done Exercises Seek emergency help Dial 911 or push emergency button, visit first responders Pay bills Basic budgeting workshop, maintaining a calendar at home Household chores Carry laundry, sort & put away clothes Cooking Plan, shop, cook 1 x/week; learn to load a Crock Pot Grocery Shop Accompany parent 1 x/week, fetch 5 items; unload cart onto belt Build Friendships Call a friend once a week; arrange a meetup; have a monthly BBQ

Takeaways A vision is only as good as the rendering of a result. Any vision of the future requires taking inventory of current strengths, ways to build strength, and knowing how to achieve them. We need to be thorough in our thinking; break down each element of our vision and try to consider all possible scenarios. Creating action steps based on the skills needed, instead of simply thinking conceptually, leads to greater outcomes. By identifying skills needed and actions to take to build them, school teams and Circle of Support members typically begin to offer up ways they can help; they become invested in the vision because they understand it and realize how they can apply their own individual (or team) strengths to be supportive. They commit. Do not get mired in the highest possible outcome for any goal. Many goals can be achieved, they just might need to be achieved with modifications. That’s still a success!

Thank you for joining me! One stop for every possible way to reach me: Today’s slides: www. about. me/cherylryanchan http: //www. slideshare. net/cherylryanchan My sites: www. personcenteredplanning. com www. successfultransitions. org Clipart provided by: http: //www. clker. com/