FAMILY VOICES OF WISCONSIN

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

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

Preview Activity What Do I Have At My Fingertips?

Structure of Training • Case based method of instruction • Meet the Goodpeople Family

MODULE IPart A The Journey of Parenting a Child with Special Needs

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 children’s hospital and teaching institution. Shortly after Emma was born, she was transported to the children’s hospital and spent five weeks in its Newborn Intensive Care Unit (NICU).

The Story, Part A, continued While they were in the NICU, the hospital’s 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 couldn’t take in all the information that was given to them by Louise and many other well meaning individuals.

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?

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.

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

MODULEIPART B The Role of Being a Parent of a CYSHCN and Relationships with Others

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 Goodpeople’s 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 Emma’s needs. Service coordination was truly a gift for the family.

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?

You Are Your Child’s First and Best Advocate • You are the most important person in your child’s 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.

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

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

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?

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

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

Parents and Coordinators Work Together to Develop Service Plans • During the course of your child’s 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 family’s priorities and define services for your child. • A service plan should be succinct; word choice matters.

Part B: HandoutsThe Role of Being a Parent of a CYSHCN and Relationships with Others • What exactly is service coordination?

MODULE IPART C Public Support Systems Available to Assist You and Your Child

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 county’s 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.

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

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

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)

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 Wisconsin’s 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)

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)

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 Wisconsin’s counties • Important to continually keep county supervisor’s aware of issues that affect your child and your family

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

Part C: HandoutsPublic Support Systems Available to Assist You and Your Child • Wisconsin Services for Children with Disabilities • What are waivers?

MODULE IPART D How to Survive Waiting Lists

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?

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

For What Kinds of Services Might My Child Be Placed on aWaiting List? • Respite care • Family support • Children’s 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

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 County’s Families Can’t 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)

Part D: HandoutsHow to Survive Waiting Lists • Ending Waiting Lists for Families and Programs Working Together

MODULE IPART E Parents as Advocates for Systems Change

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.

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

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 doesn’t • 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

What Can Parents Offer Decision Makers? • We don’t have to accept that it’s 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

What Happens When Families Get Involved in Systems Change? • Principles of Family Centered care are included (B-3 service coordination) • Systems become more responsive (Children’s Redesign) • Stakeholders are more fully represented • We truly can serve as the voices for our families

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

Children’s Redesign:An Example of Systems Change • Effort began in 1997 and continues • Successes include: • Three new Children’s Waivers • “One stop shopping” for eligibility screening • Regional Centers network • Improvements in MA Prior Authorization process

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 Children’s Redesign? • State Level Councils, Boards, Committees or Organizations

MODULE IPART F Resources in Wisconsin

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 Katy’s 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.

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

Part F: HandoutsResources in Wisconsin • Roadmap for Families • Information, Assistance and Advocacy Resources • Family Voices Brochure • Regional CYSHCN Brochure

FAMILY VOICES OF WISCONSIN