Parents United for Children with Disabilities Together We Can Do So Much Ninth Annual Alliance Natio

1
Parents United for Children with
DisabilitiesTogether We Can Do So MuchNinth
Annual Alliance National ConferenceJanuary 25
27, 2006

• Looking At Life Through Triple Lenses One
  Familys Journey
• Lessons Learned
• Vernessa T. Gipson MSW
• Brianna T Morgan
• Champaign, Illinois

2
P P Certified

• Practitioner Skills and Experience 25 years
• MS Child Development
• MSW School Social Work
• Certified in Realty Therapy
• Education Advisor for Youth in Foster Care
• Regional Coordinator EBD Network

• Parenting Experiences
• 24 Years of Parenting
• Cerebral Palsy
• ADD
• Learning Disability
• Therapies
• Medical Services
• Counseling
• Special Education
• Community Inclusion

3
(No Transcript)
4
Parent Training and Information Centers What a
Resource!!

• Whos Here????
• Persons with disabilities
• Family members of youth with disabilities
• Family and Youth Support Staff
• Program Administrators
• Funders, policymakers, research and evaluators
• Other allies.

5
Looking at Life Through Triple Lenses . .Our
Familys Journey Lessons Learned Along the Way

• Our view of the world is shaded by our life
  experiences and current circumstances.

6
(No Transcript)
7
Goals

• Not to run out of time
• Identify strategies and techniques for lens
  assessments by
• Hearing families stories
• Understanding basic needs and behaviors
• Valuing Child and Family Teams
• Assessing community resources
• Sharing common language and knowledge
• Preparing for transitions

8
Anticipated Outcomes

• I already knew that but thanks for the reminder
• I never thought about it that way.
• Can We Talk Later????

9
What a Story Can Tell You

• Ideal Life
• Husband, Job in new city, college graduate,
  pregnant with first child,
• Baby shower planned, room theme colors picked,
  names under discussion,
• All is good with the world!!

10
November 18, 1981

• Its a girl!!!!
• 2lbs 2oz
• 12 inches long
• Apgars 3 6
• Respirator
• Jaundice
• Feeding tubes
• Heel sticks
• Blood gases
• Respiratory distress

11
(No Transcript)
12
Life Journey Detoured

• Lack of preparedness
• No instruction guide
• No Preemie manual
• No close support system
• Isolation
• No map quest, NO Map it, No Internet,
• Where do we go from here???

13
January 17, 1982

• The Day I Became a Client or Open Case
• Public Health
• Birth Three Services
• Lekotek
• OT
• PT
• Speech and Language
• Calgon Take Me Away!!!

14
(No Transcript)
15
No Longer the Driver of My Journey!!

• Did as I was told.
• No questions asked
• Too young to know better
• Too scared not to
• No one to ask questions.

16
FinallyA diagnosis!!

• Developmentally delayed
• Quadriplegic spasticity
• Strabismus
• Cerebral Palsy
• What does that really mean??

17
According to Research

• We were progressing along an expected path
• Diagnosis prior to Pre-K
• Marital stress
• Bouts of grief _at_ developmental milestones

18
Different Lenses for Different Situations

• Reading glasses -for close up work
• Computer glasses focus on detailed work
• Distance glasses long range views
• Sunglasses bright days gloomy days

19
Triple Lenses for Triple Minority

• Life circumstances will determine the lenses you
  will use and when you will you them
• Gender Lens
• Race Ethnicity Lens
• Spirituality Lenses
• Disability Lenses

20

• As families with children with disabilities we
  must look through life with multiple lenses given
  the number of systems we must work with.
• We will seek, accept and evaluate services based
  upon our life circumstances and cultural
  relevance
• To really know us you must understand how we see
  the world

21
Journey Roads plus one

• My Daughter
• OHI and ADD
• African American
• Female
• Christian
• Hip Hop Culture
• Socially Isolated
• Family Restructure

• My Boys
• ED or BD
• Conduct disorder
• No eligible
• Poor prognosis
• Juvenile Justice
• Vs Mental Health
• Family Frustration

22
(No Transcript)
23
(No Transcript)
24
How well do you really know your families

• Basic Needs Assessments
• (more than an intake form its a conversation)
• Belonging
• Power
• Freedom
• Fun

25
A Good Life is Like Sitting in a Balanced Chair
survival
FUN
Freedom
Belonging
Power
26
Behaviors

• All behaviors are our BEST attempt to get our
  needs met.
• All behaviors are chosen and only I can balance
  my chair.
• You may assist by helping me learn new skills and
  access resources for change.

27
Service Assessment

• Would the families most in need say
• I can get some or most of my needs meet by coming
  to our agency
• I feel connected to the people in the agency
• I have the ability to make choices
• I get information, skills, supports that relevant
  to my needs as determined by me
• Its an enjoyable place to be or I enjoy being
  with the people within the organization
• That which is need fulfilling, I will keep in my
  quality world.

28
Help Families Develop Child and Family Teams

• You wont be in their lives forever
• A families view of help and support members will
  be determined by their lenses
• Who we want in our helpers circle will vary
  from family to family and person to person
• Natural supports are essential for long term care
• who would you call if you were in a crisis

29
(No Transcript)
30
(No Transcript)
31
Whos on Your Agencys Team?

• Do your staff, consultants, volunteers have
• skills sets and knowledge to meet the needs of
  those most in need?
• experience with the issues and the families you
  serve?
• Access to technical and cultural experts
• (including the geographical areas that your
  serve)

32
(No Transcript)
33
Mentors and Kinfolk Ive Met Along the Way

• Karl Dennis
• Dr Ira Lourie
• Dr Carl Bell
• Dr William Glasser
• Marian Wright Edelman
• Dixie Jordan
• Martin Brokenleg
• Steven Brendtro
• Dr Brenda Townsend
• Dr James Patton

• Dr Asa Hilliard
• Rev Jeremiah A Wright
• Brianna
• Adrian
• Anthony
• Stefonce
• Terell
• April
• Cierra
• Desi

34
Life is More than SchoolRemember ALL Life Domains

• family
• living situation
• educational/vocational
• social/ recreational
• psychological/emotional
• medical, legal
• safety/crisis

35
(No Transcript)
36
(No Transcript)
37
(No Transcript)
38
(No Transcript)
39
Know Your Community

• How are children and families in your community
  doing across life domains and across systems?
• Gender, race, disabilities
• Less than 15 of youth with emotional and
  behavioral disabilities graduate from high school
  in community A.
• How might this affect the opinions feelings and
  attitudes of families if these children in the
  planning process.

40
Know your community

• Family Care and Kid Care insurance is available
  to youth in Illinois but
• In our community no providers are accepting new
  patients with these overages
• How might that affect a families opinion of the
  health community?
• Brianna edit the only African American female in
  her school district at her age (11) in needs of
  long leg braces
• What lenses may impact this process???

41
Know your community

• Its one thing to make a referral based upon
  services needs and another to make a referral
  based on reality of the situation..
• How successful has agency B been with families
  like the Browns?

42
Access, Voice and OwnershipKeys to Inclusion

• System Level
• Access are family members and youth present at
  strategic planning meetings
• Voice family members have a say in how and what
  the agency does
• Ownership do family members view the
  organization as theirs?

• Service Level
• Access when, where and how services are
  delivered
• Voice family members have a say in how and what
  they want
• Ownership the plan should be seen as belonging
  to the family and youth

43
Consider Cross System Training

• Lenses of Professionalism
• Same Children
• Different training
• Different language
• Different expectation

44
Possible Subjects

• Calgon Take Me Away
• Can You Hear Me Now!
• The Bold and the Beautiful
• As the World Turns
• Why is Everybody Always Picking on Me?

45
(No Transcript)
46
Prepare for Independence as Early as Possible
When Possible

• Language for disability
• Participation in meetings
• Identifying team members
• Identifying goals
• Identifying adult services providers
• Remember that advocacy is a life long process

47
(No Transcript)
48
(No Transcript)
49
Cultivate Allies

• We can create, modify and change laws
• but its a change of heart that has personal and
  lasting impact