FASD Challenges in the Adult World

1. FASD Challenges in theAdult World Potholes in the Road to The Ideal System of Care

2. Rob Wybrecht FASD Center Steering Committee Member Substance Abuse Mental Health Services Administration Building State FASD Systems San Francisco, California May 9 - 10, 2006

3. FASD Challenges in the Adult World

4. FASD Challenges in the Adult World

5. FASD Challenges in the Adult World

6. Expectations for the Typical Adult – age 18 and older He or she will be able to: Make independent choices and judgments Work outside the home Pursue additional education, as desired Remember appointments Tell time, arrive at appointments on time Use public transportation or drive a car

7. Think Younger An 18 year old with an FASD may: Talk like a 20 year old Look like an 18 year old Read like a 16 year old Comprehend like a 6 year old Have the social skills of a 7 year old Have the emotional maturity of a 6 year old

8. Old Chinese Proverb “Tell me I Forget, Show me I Remember, Involve me I UNDERSTAND”

9. Factors that Affect AdulthoodUniversalProtective Factors Ann Streissguth • Living in a stable nurturing home over 72% of life • Diagnosis before age six • Never having experienced violence against oneself • Staying in each living situation for an average of more than 2.8 years

10. Protective Factors Continued • Living in a “good quality home” from ages 8 to 12 years • Received Developmentally Delayed services, (Special education) • Having a diagnosis of FAS rather than another FASD • Havingbasics needs met for at least 13% of life.

11. Additional Protective Factors • Parents are THE most important protective factor • Parents who regularly attend a Support Group specifically for FASD • Parents who have attended a Parenting Differently workshop or a similar training • Parents who support and encourage self advocacy

12. Parents who are comfortable with the fact that they will be a parent forever and will foreverbe parenting a child/adult with aFetal Alcohol Spectrum Disorder

13. Secondary Disabilities Mental Health Problems Dependent Living after age 21 years Trouble with the Law Employment Problems after age 21 years Alcohol and Drug Problems

14. Mental Health Problems • Does not mean mental illness, may be present, may not be present • Depression – may be secondary to FASD • Family history of bipolar, schizophrenia; continue to observe carefully • Anger Outbursts • Reactive Attachment Disorder • Disruptive Behavior Spectrum Disorders

15. DependentLiving • 80% do not live independently • How many of us live independently? • Should the goal be Independence or INTERDEPENDENCE?

16. Trouble with the Law Taking something that doesn’t belong to them, theft, shop lifting Inappropriate sexual encounters

17. FASD and Ownership • FASD = concrete thinking • Ownership is an abstract concept • FASD concept of ownership Someone has it in their hand or pocket or is with it if it is a larger item

18. Sexual Offenses Inappropriate touching May be chronologically older but cognitively and/or socially younger than friend, classmate or co-worker May have experienced inappropriate touching and is now repeating the experience

19. Problems with Employment • Job coach is discontinued, usually after six months at the most, case is closed • Boss leaves the place of employment • Person with FASD gets a promotion, or a job change, without adequate support • Bus route is changed, cannot afford car insurance renewal. • No case manager, IQ too high for services

20. EmploymentProblems Cont. • No set routine • Lack of communication or supervision, more than 1 supervisor • Trouble with time management, not completing a task before starting another • Keeping workspace organized • Remembering when time sheet is due/filling it out

21. Needs of Adults with an FASD • Ongoing love and support from parents and extended family • Knowledge that they are truly loved and always respected • Person Centered Planning/Adult Wrap Around • Ongoing experiences in the larger community • Job coaching and job carving

22. Needs Continued • Payee and/or assistance with money SSI and/or SSDI • Supervised “independent” housing • Safe supervised social events • Life coach – therapist who is there for the long term and listens carefully • Concrete classes on health, nutrition, safety • Regular physical recreation

23. More Needs • Substance abuse treatment with therapists who have knowledge of and experience with individuals with an FASD • Criminal Justice system that understands that brain differences impact their understanding, memory and behavior. Jail and prison will not change the behaviors, but structure, support, and supervision will.

24. One More Important Need A yearly conference BY and FOR Individuals with an FASD which includes Safe, structured, relaxed environment Support person for every attendee Speakers and Activities chosen by planning committee members with an FASD

25. Concrete Tools to Help • Vibrating Watch, organizer, cell phone • Clock that shows passage of time, visually • Foam earplugs • Big Clear Jug for car/house keys, wallet, watch, money, flashlight, receipts • Books with jobs for the day • Laminated Salad Bar layout • Wallet Cards to show, if stopped by police

26. Release of Information Continue to foster Trust Explain Need and Importance Practice, prior to 18th Birthday

27. Redefining Success • “I am at peace with FAS”. (Statement to Ann Streissguth, 2002) • “If I didn’t have FAS, I would not have met all you wonderful people and I would not have known Ann Streissguth and Diane Malbin” (SAFERA Conference in Quebec) Rob Wybrecht

28. Success on Our Terms • Learning how to ride the bus • Learning to ask for help • Getting to work on time • Learning personal space boundaries • Advocating for myself • Keeping a job for six months • Remembering to sign release of info form

29. My Successes Feeling good about who I am Parents look to me for hope Being kind and helpful Keeping myself safe Held two different jobs for four years, each Saved for a car for ten years AND paid cash

30. My Successes • Spreading the word about FAS/FASD via Bumper stickers – sold over 4,000 Video – Students Like Me Speaking at Conferences like this Serving on the Steering Committee for FASD Center for Excellence

31. Long Term Planning All of the previous plus: Trust Fund Family or Professional Manager Person Centered Planning/Wrap Around Need ten persons on the team Family Members Payee Clergy Employer Physician Vocational Rehabilitation MH Therapist Group Home Manager Case Manager Recreation Therapist Possible additional team members Probation Officer

32. Person Centered Planning • Takes 10 persons on the team to assist one individual with an FASD • Can happen through Community Mental Health or it may not

33. Long Term Planning • Must begin today • Must include input of individual with FASD but cannot happen without your assistance • Services may not exist, may need to be developed with very creative thinking • Disability attorney can help with the Trust Fund • Group homes may be available. • Shared living with a physically handicapped but mentally capable person is sometimes a good fit

34. Lao Tsu (700 BC)Adapted by Rob and Barb Go to the people who have an FASD Live with them Learn from them Love them Start with what they know Build with what they have But with the best leaders When the work is done The task accomplished The people with an FASD will say “We have done this ourselves!”