FAMILY VOICES OF WISCONSIN

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FAMILY VOICES OF WISCONSIN

• DID YOU KNOW? NOW YOU KNOW!
• An Introduction to Health Care Coverage and
  Community Supports for Children and Youth with
  Disabilities and/or Special Health Care Needs
• MODULE I
• Parents and Advocacy and Community Supports

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Welcome and Introductions

• About this training and the two modules
• About Family Voices of Wisconsin
• About the Regional CSHN Centers
• Meet the presenters
• Meet each other

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Preview Activity

• What Do I Have
• At My Fingertips?

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Structure of Training

• Case based method of instruction
• Meet the Goodpeople Family

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MODULE IPart A

• The Journey of Parenting a Child with Special
  Needs

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The Story, Part A

• Consider Fred and Sue Goodpeople and their two
  children, Katy, age 3 and her newborn sister
  Emma. Emma had a traumatic birth and was
  deprived of oxygen during her delivery. As a
  result, Emma has a preliminary diagnosis of
  cerebral palsy and it is anticipated that
  developmental delays will arise as she grows up.
  The family lives in Parkopia, which has a
  wonderful childrens hospital and teaching
  institution. Shortly after Emma was born, she
  was transported to the childrens hospital and
  spent five weeks in its Newborn Intensive Care
  Unit (NICU).

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The Story, Part A, continued

• While they were in the NICU, the hospitals
  fabulous social worker, Louise Imahelp, got to
  know the family and gave them many resources that
  could be helpful to them. Fred and Sue were
  overwhelmed, and couldnt take in all the
  information that was given to them by Louise and
  many other well meaning individuals.

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Questions and Considerations

• What is different about having a child with a
  disability or a special health care need?
• What has been most helpful to you as you learn
  about health care and community resources?
• What has been most difficult for you as you learn
  about these resources?

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The Learning Journey

• Throughout this training and in your journey,
  remember the following
• Various professionals will be well meaning and
  attempt to provide information to you whether you
  are ready or not You can and should ask for
  information in a format you are comfortable with.
• You are on a journey of life long learning and
  cannot know everything there is to know.
• Regardless of where you are on the journey, you
  know your child best and must always bring that
  expert perspective to any conversation.

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Part A HandoutsThe Journey of Parenting a
Child with Special Needs

• An Internet Guide Useful Web Sites for Parents
  of Children with Special Helath Care Needs

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MODULE IPART B

• The Role of Being a Parent of a CYSHCN and
  Relationships with Others

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The Story, Part B

• One of the most useful connections that Louise
  made for the Goodpeople family was to the Birth
  to Three program in their county. Louise made
  sure that the B-3 Coordinator, Jody, met the
  family in the hospital before Emma was
  discharged. Jody then set a date to visit with
  the family at home the following week. Jody, it
  turns out, is the Goodpeoples service
  coordinator. Fred and Sue were beside themselves
  with delight! How wonderful, they thought, that
  there was someone who could help them with all of
  Emmas needs. Service coordination was truly a
  gift for the family.

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Questions and Considerations

• As a parent of a CYSHCN, do you have someone who
  can help you coordinate the services and supports
  that your child needs?
• If you do, do you have more than one person? If
  so, do they interact with one another?

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You Are Your Childs First and Best Advocate

• You are the most important person in your childs
  life. You have expertise about you child no one
  else has.
• When you have a child with special needs, you may
  need to develop relationships with people you
  have not expected.
• You often might have to be more assertive in
  voicing your opinions than you are comfortable
  with.

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What is Assertiveness?

• Assertiveness means
• Expressing your needs clearly and directly
• Expressing your ideas without feeling guilty or
  embarrassed
• Sticking up for what you think your child needs
  even though the experts might not agree
• It may also mean not having to agree with the
  said experts or providers

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Assertiveness Does NOT Mean

• Being angry, aggressive or offensive
• Beating around the bush
• Feeling too guilty or afraid to express your
  needs
• Agreeing with professionals no matter how you
  feel because you think professionals know best

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How to be an Effective Advocate

• You can disagree without being disagreeable be
  well informed, calm, prepared and persistent
• Remember your goals take one issue at a time
• Set reasonable goals set one goal and try to be
  assertive
• Think about where you might be willing to
  compromise. Agreeing on part of an issue is
  often a start in the right direction.
• Express your feelings without blaming messages
  I messages rather than You messages
• Stay informed read newsletters, check out
  websites, attend workshops, talk with other
  parents, participate on advisory committees. How
  can a person be in the know where can
  resources be found?

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Partnerships with Service Coordinators

• Service coordinators are some people who can help
  you navigate and manage the various support
  systems for your child. Examples include
• Birth to Three Service Coordinators
• Medical nurse care coordinators
• School case managers
• Family Support program coordinators
• County case managers

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Relationships with Service Coordinators

• Parents should continually bring up concerns and
  ideas to service coordinators.
• Service coordinators have large caseloads
  families will benefit when they regularly
  communicate with their service coordinators about
  needs

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Parents and Coordinators Work Together to Develop
Service Plans

• During the course of your childs development,
  you will encounter different kinds of service
  plans. They can include Individualized Family
  Service Plans (IFSP, used in Birth to 3)
  Individualized Education Plans (IEP, used in
  public schools, ages 3 21) County Individual
  Service Plans (birth to death) and Medical Care
  Plans (for medically involved individuals).
• Some service plans are legal agreements and some
  are less formal.
• A service plan should facilitate communication
  about your familys priorities and define
  services for your child.
• A service plan should be succinct word choice
  matters.

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Part B HandoutsThe Role of Being a Parent of a
CYSHCN and Relationships with Others

• What exactly is service coordination?

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MODULE IPART C

• Public Support Systems Available to Assist You
  and Your Child

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The Story, Part C

• When Emma was several months old and was
  medically stable, Fred and Sue realized that they
  needed a break from the intensive care they were
  providing to both their daughters. They
  mentioned this to Jody, who immediately realized
  that she should have already made a referral to
  the countys Family Support Program. Jody began
  a conversation with Fred and Sue about different
  services that Emma could be eligible to receive.
  Fred and Sue were very confused about how all of
  these services worked together, so Jody
  illustrated ways in which the federal, state and
  local systems of support were coordinated.

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Questions and Considerations

• What are some of the programs and supports that
  you and your family are already involved with on
  your journey?

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The Relationship Between Federal, State and Local
Programs

• Federal Government provides Funding and
  Requirements to
• State Governments who provide Funding and
  Requirements to
• Local Systems of Services, including Counties

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Wisconsin Services for Children with Disabilities

• In Wisconsin, the delivery of some services are
  the same for all children (statewide programs)
  and some services differ in delivery,
  availability and waiting lists from county to
  county (county based programs)

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Federal Programs

• Some federal programs that affect CYSHCN include
• Centers for Medicaid and Medicare Services (CMS)
• Provides funding for Family to Family Health
  Information Centers
• Medicaid services
• Maternal and Child Health Bureau (MCHB)
• Provides funding for Wisconsins Title V program
  and its Regional CYSHCN Centers
• Office of Special Education Programs (OSEP) from
  the US Department of Education
• Birth to Three Programs
• School based special education
• Social Security Administration (SSA)

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Statewide Programs

• These programs include
• Birth to 3 Program
• Medicaid card health services
• Regional CYSHCN Centers
• Early Childhood through the public schools with
  IEP
• K-12 education through the public schools with
  IEP
• Transition services (18 21) through the public
  school with IEP (although services vary greatly
  between school districts)
• Social Security Programs (including Supplementary
  Security Income (SSI)

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County Delivery of Services

• In Wisconsin, the county governments have a lot
  to do with how, and to what extent, services are
  delivered to both children and adults with
  disabilities
• There is great variability in the delivery and
  quality of services among all 72 of Wisconsins
  counties
• Important to continually keep county supervisors
  aware of issues that affect your child and your
  family

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County Based Programs

• Family Support Program (FSP)
• Medicaid waiver programs, including CIP, COP,
  Childrens Home and Community Based Waivers
• County services, e.g. Respite Program
• Community Support Program (wraparound)

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Part C HandoutsPublic Support Systems
Available to Assist You and Your Child

• Wisconsin Services for Children with Disabilities
• What are waivers?

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MODULE IPART D

• How to Survive Waiting Lists

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The Story, Part D

• There is a two year waiting list to get services
  from Family Support, but a place on wait list
  would provide the Goodpeople with some respite
  services. Fred and Sue were delighted, again, to
  learn of respite, but dismayed that there was a
  two year wait list for other services. Why was
  this and what could they do?

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Waiting Lists

• They are an unfortunate reality
• They exist throughout the state, even though they
  vary from county to county
• They affect amount of services and quality of
  services received
• There is not enough money for people with
  disabilities to have the help they need to live
  in the community
• Families need money to keep their children with
  disabilities safe and healthy in their homes

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For What Kinds of Services Might My Child Be
Placed on aWaiting List?

• Respite care
• Family support
• Childrens waivers
• Your child CANNOT be placed on a waiting list for
  Birth to Three services or for Medicaid card
  services waiting lists are not allowed for
  these services, but there are often lag periods
  while eligibility for these programs is
  determined
• Limited access to some Medicaid providers,
  including dentists and mental health professionals

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What Can You Do While Your Child is on a Waiting
List for Services?

• Be creative not everything needs a formal
  solution
• Look at possible funding for one-time support
  needs, such as Dane Countys Families Cant Wait
  program
• Look at alternative sources of supports, such as
  using personal care as supported by the Medicaid
  card to help care for your child while you are
  waiting for respite services (remember that this
  is not the same service)
• Disabilities Advocates of Wisconsin Network
  (DAWN)

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Part D HandoutsHow to Survive Waiting Lists

• Ending Waiting Lists for Families and Programs
  Working Together

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MODULE IPART E

• Parents as Advocates for Systems Change

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The Story, Part E

• Jody knew that Fred and Sue are interested in
  having an impact on reducing the length of time
  that families need to wait to receive needed
  services. Jody informs them of an opportunity to
  tell their family story through an effort that is
  being organized by a group of parents. By
  submitting a photo of their family and telling
  their story to the No Place Like Home campaign,
  they have dipped their toes into the waters of
  system change and advocacy.

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Questions and Considerations

• What do parents offer to decision makers?
• Why is it important to be involved in systems
  change?

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Parents Offer a Valuable and Unique Perspective

• We are resourceful and have good ideas
• As parents and guardians, we have a lot of
  knowledge about what works and what doesnt
• We can take our difficult and challenging
  situations and do things to make them better
• We can make a difference in the lives of our
  children and in the systems that support them

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What Can Parents Offer Decision Makers?

• We dont have to accept that its ok if a system
  works poorly
• We can see inconsistencies that professionals
  might overlook
• We have valuable information to bring changes to
  a system we live in the system
• Our expertise is critical to improving services
  and utilizing resources most effectively

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What Happens When Families Get Involved in
Systems Change?

• Principles of Family Centered care are included
  (B-3 service coordination)
• Systems become more responsive (Childrens
  Redesign)
• Stakeholders are more fully represented
• We truly can serve as the voices for our families

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Ways You Can Become Involved in Systems Change

• School and doctor office opportunities
• Advisory committees state and local
• Public hearings state plans, local and state
  budgets, statute changes
• Letter writing
• Training other parents to become confident
  advocates

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Childrens RedesignAn Example of Systems Change

• Effort began in 1997 and continues
• Successes include
• Three new Childrens Waivers
• One stop shopping for eligibility screening
• Regional Centers network
• Improvements in MA Prior Authorization process

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Part E HandoutsParents as Advocates for
Systems Change

• Family Voices Parent Advocacy
• Family Support Advisory Committee
• Benefits of Families as Advisors
• Advisory Roles Parents Can Play
• Guiding Philosophy
• What is Childrens Redesign?
• State Level Councils, Boards, Committees or
  Organizations

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MODULE IPART F

• Resources in Wisconsin

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The Story, Part F

• In the meantime, while Fred and Sue were waiting
  for their turn to come up on the respite waiting
  list, another parent at Katys daycare (who also
  has a child with special needs) mentioned the
  help that she received from the Regional Center
  for Children and Youth with Special Health Care
  Needs that serves their community. The
  Information and Referral staff person at the
  Center gave them needed information on support
  groups for Fred and Sue and sibling support
  opportunities for Katy.

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Resources in Wisconsin

• Regional CYSHCN Centers Five locations
  throughout Wisconsin
• First Step 1-800-642-7837
• Disability specific and need specific resources
  county roadmaps are a good place to begin

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Part F HandoutsResources in Wisconsin

• Roadmap for Families
• Information, Assistance and Advocacy Resources
• Family Voices Brochure
• Regional CYSHCN Brochure

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Wrap Up

• Activity What do I NOW have at my fingertips?
• Evaluation

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Contact Us!

• Family Voices of Wisconsin
• P.O. Box 55029
• Madison, WI 53705
• Websitewww.wfv.org/fv
• Email barb_at_fvofwi.org or liz_at_fvofwi.org
• Barbara Katz and Liz Hecht, Co-Directors

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Our Thanks

• We are most grateful to the cooperation and
  support of Wisconsins CYSHCN Title V Program and
  the Regional CYSHCN Centers, and to the Centers
  for Medicare and Medicaid Services.