# Presentation: 182526

## FASD Challenges in theAdult World

- Potholes in the Road to
- The Ideal System of Care

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

##         FASD Challenges      in the       Adult World

##         FASD Challenges      in the       Adult World

##         FASD Challenges      in the       Adult World

## 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

## 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

## Old Chinese Proverb

- “Tell me I Forget,
- Show me I Remember,
- Involve me I **UNDERSTAND**”

## Factors that Affect AdulthoodUniversal Protective 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

## 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
- Having basics needs met for at least 13%
-     of life.

## 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

## Parents who are comfortable with the fact that they will be a parent forever and will foreverbe parenting a child/adult with aFetal Alcohol Spectrum Disorder 

## 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

## 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

## Dependent Living

- 80% do not live independently
- How many of us live independently?
- Should the goal be Independence or
- 			INTERDEPENDENCE?

## Trouble with the Law

- Taking something that doesn’t belong to them, theft, shop lifting
- Inappropriate sexual encounters

## 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

## 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

## 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

## Employment Problems 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

## 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

##  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

## 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.

## 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

## 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

## Release of Information

- Continue to foster Trust
- Explain  Need and  Importance
- Practice, **prior** to 18th Birthday

## 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

## 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

## 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

## 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

## 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

## 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

## 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

## 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!”