UofL_Logo_Curtain_Inside UofL_Stripe Transition to Adulthood Jennifer Bobo, LCSW. UofL_Logo_Curtain_Inside Kentucky Autism Training Center Today’s Agenda •Planning for the future •Building a base •Building skills for competency and success •Building opportunities for happiness and well- being UofL_Logo_Curtain_Inside Sometimes you need a map to know where you’re going… Beijing-Tourist-Map-2.jpg UofL_Logo_Curtain_Inside How to get parents to start thinking long-term? •Housing •Employment •Higher-education •Support system •Financial Security •Self-help skills UofL_Logo_Curtain_Inside Questions to ask Parents What kind of life do you want for your son or daughter? What kind of life would your son or daughter want? What expectations do you have for your other children? Do you want your son or daughter to have choices? Do you want your son or daughter to be able to express their wishes? UofL_Logo_Curtain_Inside What parents often plan for Funding Special Needs Trust Guardianship Housing Medical Care UofL_Logo_Curtain_Inside But what’s most important to the Individual? Family Friends Work Romantic Relationship Hobbies UofL_Logo_Curtain_Inside Self Determination People with disabilities have the right and ability to choose and control their own quality of life, goals, and services. http://www.fulllifehawaii.org/selfdetermination.html UofL_Logo_Curtain_Inside Consider Self Determination when planning for the child’s future. •Services •Staff •Housing •Roommates •Employment •Guardian •Classes •Dinner •Cereal choices •What chore to do first •Clothing •Friends •Movie •How to spend allowance UofL_Logo_Curtain_Inside Choice Giving choices can •Give a person a sense of control •Reduce problem behavior •Aid in the development of self-determination UofL_Logo_Curtain_Inside Embedding Choice into Daily Routines •Choices during free time •Choosing which chore to complete first •Choosing breakfast cereals at the grocery •Choosing snack items after school •Choosing what to wear in the morning Planning for the future: Maslow’s Hierarchy of Needs Self- actualization Esteem needs Belonging and love needs Safety needs Physiological needs Basic Needs: Funding, Special Needs Trust, Guardianship, Plan B Psychological Needs: Work at school and home to build skills for competency and success Self-fulfillment needs: Feeling accomplished, being creative UofL_Logo_Curtain_Inside Building a Base UofL_Logo_Curtain_Inside Special Needs Trusts Purpose: Protect benefits of beneficiary, and increase quality of life •Must be set up by a lawyer •Lots of rules •A “trustee” is responsible for the SNT •Money in the trust not “countable income” for beneficiary Yussman (2010). UofL_Logo_Curtain_Inside Special Needs Trusts First Party Trust is sometimes called “self- settled”, “Medicaid Payback Trust”, or “Pooled Trust” Third Party SNT is usually created by relatives’ estate plans Yussman (2010) UofL_Logo_Curtain_Inside Who can have a SNT? Person with a “disability”, as defined with social security determination Yussman (2010) UofL_Logo_Curtain_Inside Examples of what a trust may be able to pay for can be paid for by the trustee of the SNT: Out-of pocket medical and dental expenses; Home improvements; Medical equipment not provided by Medicaid; Computers, etc; Eyeglasses; Cable TV; Exercise equipment; Telephones, TVs, radios; Annual independent checkups; Cameras; Transportation; UofL_Logo_Curtain_Inside SNT •Overview of Special Needs Trust Webinar –Richard Bush •https://louisville.edu/education/kyautismtraining/videos UofL_Logo_Curtain_Inside Guardianship “Guardianship is a legal tool that grants a parent or other adult the legal authority to make decisions for a legally disabled adult.” http://www.kypa.net/drupal/?q=taxonomy/term/132 UofL_Logo_Curtain_Inside Guardianship Depending upon the specific rights the court takes away, the guardian’s duties may include: •Arranging for a place for the ward to live in the least restrictive environment •Arranging for educational, social, vocational, and rehabilitation services •Arranging for other services the ward needs to meet his needs •Consenting to medical treatment for the ward •Managing the ward's finances, unless the court has appointed a separate conservator http://www.kypa.net/drupal/?q=taxonomy/term/132 UofL_Logo_Curtain_Inside Guardianship A guardian MAY NOT consent to abortion, sterilization, psycho-surgery, removal of a bodily organ, or amputation of a limb without court approval unless there is an emergency that requires it. http://www.kypa.net/drupal/?q=taxonomy/term/132 UofL_Logo_Curtain_Inside Levels of Guardianship Full guardian if the person is unable to take care of all his personal needs Limited guardian if a person can take care of some personal needs but needs help in other areas Conservator if the person only needs help with his finances Both a conservator and a guardian http://www.kypa.net/drupal/?q=taxonomy/term/132 UofL_Logo_Curtain_Inside Alternatives to Guardianship •Advance Directives •Bank Account Requiring Co-Signatures •Citizen Advocacy •Curator •General Adult Services •Power of Attorney •Representative Payee http://www.kypa.net/drupal/?q=taxonomy/term/132 UofL_Logo_Curtain_Inside Letter of Intent Documents a variety of important issues detailing what they want for the future of their loved one. Update on an annual basis Keep with family records UofL_Logo_Curtain_Inside Letter of Intent Quality of Life issues are those things that need to be in place for each of us to be comfortable in our daily lives. Where the person will live Religious Affiliation Continuing Education Employment preferences Social activities preferred Medical care required Behavior management practices Medical care required Social activities Advocacy and guardianship needs Trustees identified Financial arrangements Detailed instruction for everyday living activities Communication See example! UofL_Logo_Curtain_Inside Funding After 21, funding is no longer a right! UofL_Logo_Curtain_Inside Supports for Community Living (SCL) Michelle P Waiver Home and Community Based Wavier (HCB) Medicaid Waivers This presentation was created from information that was obtained from secondary resources on 10/29/2010. UofL_Logo_Curtain_Inside Different waivers meet the needs of different families and individuals Possible changes in insurance and possible “patient liability” or co-pay for services. Choosing a Medicaid Waiver UofL_Logo_Curtain_Inside Other Funding Options •Hart Supported Living Grant •KY IMPACT •Impact Plus UofL_Logo_Curtain_Inside Social Security When your son or daughter turns 18, they may re-apply for social security as an adult. This presentation was created from information that was obtained from secondary resources on 10/29/2010. UofL_Logo_Curtain_Inside Office of Vocational Rehabilitation The Office of Vocational Rehabilitation provides initial funding to people with disabilities to obtain and retain suitable employment If you would like more information, talk with your son or daughter’s teacher, visit www.ovr.ky.gov or call (800) 372-7172 to find your local branch UofL_Logo_Curtain_Inside Building Skills for Competency and Success UofL_Logo_Curtain_Inside Skills at home It’s never too early to teach the child skills they will need in the future. Regardless of ability, what’s important to teach children for the future? UofL_Logo_Curtain_Inside Common Housing Options •With parents in family home •With other relative in family home •Foster home •Immediate Care Facility (ICF/MR) •Nursing home •Group home •In own home, with support •In own home, independently UofL_Logo_Curtain_Inside Skills at Home Doing chores at home builds work ethic, a sense of responsibility, and vocational skills for the future! Support parents in encouraging skill development in their sons and daughters. UofL_Logo_Curtain_Inside Skills at Home Take an inventory! •Hygiene •Safety •Cooking •Basic cleaning and chores •Laundry •Grocery shopping UofL_Logo_Curtain_Inside Skill Building 5 Year old-Choose dinner once a week. 8 - Chooses dinner once a week. Assists at the grocery store in selecting items. 10 - Chooses dinner, helps put together a list before going to the grocery. Helps prepare food items and clean up. 12 - Chooses dinner, grocery list, takes lead in preparing food, helps clean up. UofL_Logo_Curtain_Inside Recommended Characteristics of Transition Practices 1.Implement positive behavior supports to address behavior challenges 2.Match IEP goals to the student and family’s vision for the future 3.Take advantage of inclusive experiences 4.Provide a variety of community based experiences 5.Assist in the coordination of ‘seamless’ transition to new resources and service providers in the community Wehman (2009) UofL_Logo_Curtain_Inside Transition Practices 1.Implement positive behavior supports to address behavior challenges Research tells us the longer a person exhibits a behavior, the more difficult it is to change Behavior challenges may limit the child’s participation in inclusive or community experiences! UofL_Logo_Curtain_Inside Transition Practices 2. Match IEP goals to the student and family’s vision for the future Everything learned in school should prepare the child for their future. UofL_Logo_Curtain_Inside The closer you get to graduation, you need to re-evaluate your plan Prioritize skill acquisition! UofL_Logo_Curtain_Inside Consider using accommodations to get around hard to learn skills Counting money Debit Card Cleaning products Non-toxic, all-purpose wipes Cooking on a stove George Foreman grill, microwave UofL_Logo_Curtain_Inside Transition Practices 3. Take advantage of inclusive experiences The best way to learn acceptable social skills is from peers! More inclusive experiences may lead to greater community inclusion UofL_Logo_Curtain_Inside Transition Practices 4. Provide a variety of community based experiences The best place to learn skills is where you will need to use them! Exposure to the community increases the child’s experience base, as well as the experience base of your community members. UofL_Logo_Curtain_Inside Transition Practices 5. Assist in the coordination of ‘seamless’ transition to new resources and service providers in the community Throughout the child’s high school career, build resources and relationships. Don’t wait until May! UofL_Logo_Curtain_Inside Choosing Providers Families need to be proactive in choosing providers and services •Talk with other consumers •Talk with employees from the agency Consider experience, training, caseload of staff, do they seem to care? UofL_Logo_Curtain_Inside Make Employment a Priority •That’s why we become educated (IDEA) •More money! •Greater sense of independence •Integration in the community UofL_Logo_Curtain_Inside Post-Secondary Education Higher Education Act of 2009 states that an individual with a disability (including intellectual), otherwise qualified for admittance into a University, may NOT be discriminated against. UofL_Logo_Curtain_Inside Post-Secondary Education Opportunities in KY •SHEP Program through HDI, UK •Kelly Autism Program at WKU •Developmental Disabilities Clinic at EKU Every University has a Disability Resource Center that can assist the child UofL_Logo_Curtain_Inside Building Opportunities for Happiness and Well-being UofL_Logo_Curtain_Inside Use special interests as a jumping off point for skill development, motivation, and friendship building UofL_Logo_Curtain_Inside Questions to ask parents What special interests does your child have? Are there activities that your other children participate in? UofL_Logo_Curtain_Inside Special Interest example “As a young adult, some of the happiest days of my life were working in equipment design where I had to figure out how to design things.” ---Temple Grandin Accomplished author, speaker, animal activist, and woman with ASD. UofL_Logo_Curtain_Inside UofL_Logo_Curtain_Inside Don’t forget to encourage development of leisure skills or hobbies! http://www.indiana.edu/~nca/leisureed/leisure. html UofL_Logo_Curtain_Inside What about making friends? Encourage parents to speak with teachers or counselors about students the child might be friends with As the child gets older, encourage participation in organizations associated with special interests UofL_Logo_Curtain_Inside Getting Older As the child enters middle school, and moves on to high school, social situations may get more complicated! Explicit instruction may be needed. Like any other skill, use evidence based practices to teach social skills. UofL_Logo_Curtain_Inside Social narrative example Taking a date to a dance can be fun! You can dance and hang out with your date. To get a date, you have to ask a person on the date and they have to say “Yes”! Lots of people are nervous that someone will say “No”. It’s okay to be nervous or sad if someone says “No”. You can say “Would you like to go to the dance with me?”. If the person says “No”, it’s okay. You can say back, “That’s okay, thanks!”. Then, you should walk away. There are lots of people you can ask to the dance. It will be fun to go with someone else! UofL_Logo_Curtain_Inside Boyfriends and Girlfriends! While people with ASD may have difficulties with social interactions, a romantic relationship/ intimacy may still be desired. Autism doesn’t affect hormone production! UofL_Logo_Curtain_Inside Dave and Lindsey 0202-lindsey-nebeker-dave-hamrick_at.jpg •Both successful, professional adults diagnosed with ASD •Met at an autism conference in 2005 http://www.glamour.com/magazine/2009/02/theyre-autistic-and-theyre-in-love#ixzz1Dwsriveh “I’m so lucky to have found him,” she says. “When I’m with him, I forget about my challenges.” UofL_Logo_Curtain_Inside Bringing it all together…. Self- actualization Esteem needs Belonging and love needs Safety needs Physiological needs Self Determination UofL_Logo_Curtain_Inside Shoot for the moon. Even if you miss, you’ll land among the stars. moonstars_noao.jpg UofL_Logo_Curtain_Inside Autism Speaks. (2011). Transition Tool Kit. Retrieved: 3-23-11 from http://www.autismspeaks.org/community/family_services/transition.php Baker, B & Brightman, A. (1994). Steps to Independence: A Skills Training guide for Parents and Teachers of Children with Special Needs. Maryland: Paul H Brookes Publishing Co. Full Life. (2007). Self determination. Retrieved: 4-18-11 from http://www.fulllifehawaii.org/selfdetermination.html Protection and Advocacy. (2008). Guardianship. Retrieved: 4-11-11 from http://www.kypa.net/drupal/?q=taxonomy/term/132 Wehman, P., Datlow Smith, M. & Schall, C. (2009). Autism & the Transition to Adulthood Success Beyond the Classroom. Maryland: Paul H Brookes Publishing Co. Yussman (2010). Special Needs Trusts: When and How to Use Them. Kentucky Bar Association UofL_Logo_Curtain_Inside Questions? Contact info: Jennifer Bobo, LCSW jlbobo02@louisville.edu Kentucky Autism Training Center C:\Documents and Settings\djvitt01\Desktop\Space Camp.jpg Center contact info: Telephone: (502) 852-2467 or 800-334-8635 ext. 852-4631 Fax: (502) 852-7148 E-mail: katc @ louisville.edu https://louisville.edu/education/kyautismtraining UofL_Logo_Curtain_Inside KATC Wants Your Feedback! Please take 3 minutes to complete the web-based evaluation at: www.surveymonkey.com/s/ KATC_WORKSHOP_2010_2011 UofL_Logo_Curtain_Inside Stay Connected to the KATC Visit or web site: www.louisville.edu/education/kyautismtraining Join our listserv send a note to katc@louisville.edu Macintosh HD:Users:rlgrau01:Desktop:Unknown.jpeg