Leave No Child With Special Needs BehindSponsored by:US Dept of Health & Human Services / Centers for Medicare and Medicaid Services Grant # 11-P-92506/8-01 & Department of Human Services/Medical Services Division /CSHS

Family Voices of North Dakota Health Information and Education Center

TodayFederal and State issues of children with special health needsParent/Professional CollaborationMoving Forward

What Does Family Voices Do?Family Voices is a national grassroots clearinghouse for information and education concerning the health care of our children with special health needs.FVND is a statewide Health Information and Education Center

About Children and Youth with Special Health Care NeedsChildren with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generallyDefinition developed by Maternal and Child Health Bureau July 1998

Health CareApprox. 14 million children have a chronic health condition. Approx. 19,000 ND children

4 million have a condition that limits their school and play activities.

Family Voices 2003

IntroductionChildren with Special Health Care Needs:

Impacted by the most systemsImpact the whole familyMay have insurance or funding streamsNeed to understand all the systems available

Health Payer SystemsHealth InsuranceCHIP/Healthy StepsMedicaid EPSDTChildrens Special Health ServicesSSI

Systems

Every system has.Eligibility RequirementsProcesses & Procedures for Obtaining ServicesLanguage, Terms & DefinitionsAppeals Processes

Identified ProblemSome requirements vary from county to county, region to regionFamilies often dont know or understand the systems and how to navigate within programsBecomes even more difficult for children with dual diagnosis or utilizing multiple systems

What We KnowWe ALL want what is best for kids!Accessing health systems is very confusing. Families may get very frustrated! Systems dont make access for families easy.A families ability to advocate the childs best interest fluctuates dependent upon circumstances

Umbrella of ServicesHealth SystemsDevelopmental DisabilitiesSchool ServicesVocational RehabilitationDept. of Social Services

Federally authorized service systems that assist children with special health needs Title V CSHCN Programs-refers to the Title Five of the Social Security Act (SSA), Children with Special Health Care Needs Programs-ND program called CSHSMedicaid-refers to Title XIX Nineteen of the SSA

Federally authorized service systems that assist children with special health needs SSI for Children-Supplemental Security Income-Disable Childrens Program; Title XVI Sixteen of the SSACHIP/SCHIPState Childrens Health Insurance Program- Title XXI Twenty One of the SSA

Federally authorized service systems that assist children with special health needs In North Dakota SCHIP is called Healthy StepsIDEAIndividuals with Disabilities Education Act Part C describes Early Intervention programs for children birth-3 Part B describes Special Education services for children 3-21

Developmental Disabilities

Early Intervention (0-3 years of age)Family SupportRespiteAdult ServicesMuch morecall and ask!

Identified ProblemEarly Intervention Services 0-3At 2.5 years of age, child goes through redetermination processMust be deemed eligible under the adult criteria for DD services, in order to continueOften children are not eligible under this determination and hence will lose valuable services such as Medicaid

Federal Definition Federal Definition of Developmental DisabilitiesAccording to the Developmental Disabilities Act, section 102(8), "the term 'developmental disability' means a severe, chronic disability of an individual 5 years of age or older that: (1) Is attributable to a mental or physical impairment or combination of mental and physical impairments; (2) Is manifested before the individual attains age 22; (3) Is likely to continue indefinitely; (4) Results in substantial functional limitations in three or more of the following areas of major life activity; (I) Self-care; (ii) Receptive and expressive language; (iii) Learning; (iv) Mobility; (v) Self-direction; (vi) Capacity for independent living; and (vii) Economic self-sufficiency.(5) Reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic services, supports, or other assistance that is of lifelong or extended duration and is individually planned and coordinated, except that such term, when applied to infants and young children means individuals from birth to age 5, inclusive, who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities if services are not provided."

School ServicesSchoolsIDEA-federal law ensuring FAPE (Free and Appropriate Public Education)IFSP (0-3) Part C within IDEAIEP (3-up to 21)504

Ask for it in writing. You can call an IEP anytime!

Identified ProblemMany families do not know their rights under IDEA, especially true after re-authorizationNo Child Left Behind has added another layer of difficulty for children with special health care needsMany families and professionals do not understand Section 504Understanding of transition is difficult, including VR servicesFederal proposals for decrease in VR funding

Childrens Health Insurance Program (CHIP) Created in 1997 to create funds to states to allow them to initiate and expand the provision of child health assistance to uninsured, low income children.States were allowed to expand their Medicaid program or expand a separate health insurance program.

CHIP

ND Healthy Steps is not an expansion of Medicaid as in many states, it is a stand alone insuranceAdministered from the Department of Human Services, Medical Services Division

CHIP ContinuedChildren ages 0 through 18If a child is not living with their parents, only the childs income is used to determine eligibility. Eligibility is determined through Adjusted Monthly Income Limits.

Identified ProblemSCHIP, although comprehensive for CYSHCN does not cover as well as MedicaidFederally, funding for this program can easily disappearEligibility is 140% FPL, leaving little difference between 133% of Medicaid eligibilityStill gaps

Childrens Social Security Income (SSI) ProgramIs administered by the Social Security Administration.Through the SSI Program, parents or guardians of low income children with specific disabilities or chronic illness receive monthly cash benefits.

Childrens SSI ProgramEnrolling a child can be difficult and time-consuming. Separate steps are required to determine financial and disability eligibility.Application is made through your local SSA office but other agencies may be helpful.In 1996 when the Welfare Reform Act was passed the law changed which says that a childs impairment or combination of impairmentswill be considered disabling if it causes marked and severe functional limitations.

S.S.I. continued Disability is based on the childs development in comparison to children of similar age. If the expected duration of the disability is 12 months or longer.Impact of the disability on the future development of the child.Parents income/assets are considered in the eligibility. Exception: Child has been in a medical facility for a full calendar month.

Identified ProblemWhile many children with special health care needs are deemed MEDICALLY eligible for SSI in ND, very few receive SSI in NDWhen a child is SSI eligible, although they generally will receive Medicaid under the aged and disabled category, assets will be looked at VS. other Medicaid categories for children where there is an asset disregard

What is Medicaid?Title XIX of the Social Security Act is a program which provides medical assistance for certain individuals and families with low incomes and resources

MedicaidMedicaid is the federal health insurance program for low income children and adults.It is financed through both federal and state funds.

What is Medicaid?The program, known as Medicaid, became law in 1965 as a jointly funded cooperative venture between the Federal and State governments to assist States in the provision of adequate medical care to eligible needy persons.

HOW IS MEDICAID DIFFERENT FROM MEDICARE?Medicaid mainly serves low-income families, while Medicare covers elderly and disabled people who receive Social Security, regardless of their income.

Medicaid FundingCurrently, the federal government will pick up more than 50% of the cost, but not more than 75%. North Dakotas current federal match is 67.49%. Which is a steady decline from previous years

Eligibility for Medicaid

Some of the Doors to Access MedicaidMedically NeedyTANFSSISPED programs

No matter what door.ALL Children are eligible for EPSDT

EPSDT Early Periodic Screening Diagnosis and Treatment/ND Health TracksFor children birth up to 21The screen is the first step to accessing EPSDT servicesThe screen is a HEAD to TOE unclothed physical examMust prove medical necessityAdditional benefits when justified

EPSDTEarly & Periodic Screening, Diagnosis, & TreatmentMedicaids comprehensive & preventive health program for children under 21Provides screening & services at medically-appropriate intervals Provides medically necessary health care services even if the service is not available under States Medicaid plan

States must informall Medicaid-eligible persons under 21 that EPSDT is available

MedicaidChildren under 21 have a legal guarantee to screening, diagnosis, and treatment under EPSDT. Free EPSDT services include immunizations, screenings for health problems, hearing screens, vision and dental screens and any treatment that is medically necessary to correct any physical or mental illness discovered under a screen.

EPSDT - lead poisoning preventionRequired component of screeningAll children at 12 and 24 monthsChildren over 24 months if no record of previous testMedically-necessary diagnostic and treatment services must be provided to child with elevated blood lead level

Title XIXis a medical insurance program that is available to individuals who are eligible for SSI.is Medicaid.

If you are eligible for SSI you are eligible for Medicaid or Title XIX.

Identified ProblemND is a 209B state, which means the state has its own eligibility requirements and SSI eligibility is not an automatic qualifier for MedicaidFederally Medicaid reform is upon us, with discussions of removing EPSDT requirements, along with other federal mandates which could hurt children and adults

ObtainingMental HealthServices

Identified Problems Mental Health vs. Physical HealthDual DiagnosesMental Health Parity neededFamilies often have few options, in some cases relinquishing custody of their child in order to receive services

Other States Waiver ProgramDisabled Childrens Program/Katie Beckett WaiversChildren 0-18 who are living with family who need nursing care and support services.Child meets disability criteria for SSI, but is not eligible due to parents income.Cost of in-home care cannot exceed the costs in a medical facility.

Why is a Waiver So Important?Children with special health care needs is a unique population.Nearly 90% are covered by private insurance, for this population of children the problem is being UNDERinsured.

Why is a Waiver So Important?Private insurance is not comprehensive for many of these children, having caps and limits on servicesChildren with significant needs need a combination such as a waiver to assist themFamilies are having to impoverish themselves, file bankruptcy, divorce, institutionalize, and garnish custody in some cases to obtain servicesThe needs are HUGE!

New NewsLegislative session authorized the development of a waiver for medically needy children, limited in numberAuthorization of study regarding children with special health care needsAdded Russell Silver Syndrome to CSHS program

What is Childrens Special Health Services (CSHS)?CSHS is a state program that provides services to identify, treat and coordinate the health care and related services of children with chronic medical conditions and disabling illnesses.

Title V CSHCN ProgramsTo provide and promote family-centered, community based, coordinated care for children with special health care needsTo facilitate the development of community based systems of services for children with special health care needs

Title V CSHCN ProgramsTo provide rehabilitation services for blind and disabled individuals under the age of sixteen receiving benefits under SSI, to the extent medical assistance for such services is not provided under Medicaid Application is made at local county social service office

Identified ProblemFederal cuts to the program, also reduces the state matchThis could mean potentially changes in service delivery, changes to programs and possibly a decrease in the number of children served

Transition Realities90% of YSHCN reach their 21st birthday45% of YSHCN lack access to a physician who is familiar with their health condition30% of 18 to 24-year-olds lack a payment source for health careMany youth lack access to primary and specialty providersCHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002

Transition Realities (contd)Increase annual use of emergency system of care: 40% vs. 25% of typical youth Fewer work opportunities, and many are fearful of losing Medicaid eligibilityYSHCN are 3 times more likely to live on income under $15,000NOD/Harris Poll Survey, 2000

Transition Realities (contd)Interruptions inSocial/recreational activities 64%Daily living activities 59%Work 58%School attendance and performance 38%CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 1999-2002

Identified ProblemsTransition is not just about education, it involves the health, recreation, independent living and workFamilies and youth need to know their rights and responsibilities earlyServices for youth also change.. meaning having to learn an entire new system

Moving forwardMany disability organizations deal in one way or another with many of these issuesPartnering with families and family organizations is essentialWorking together, provides increased empowerment

The Future of Health Care for Children with Special Health Care NeedsTrends in health care that each state will be required to implement by the year 2010.

Healthy People 2010 Goals/Presidents New Freedom Initiative As They Relate to CYSHCNFamily Participation and Satisfaction in Decisions Around CareAccess to Affordable InsuranceEarly and Continuous ScreeningEasy-to-Access Community-based Service SystemsServices Necessary to Transition to AdulthoodAccess to a Medical Home

Whats a Medical Home?One approach to providing health care services in a high-quality and cost-effective manner is by developing a Medical Home Model in our state.

Whats a Medical Home?A medical home is not a building, house, or hospital, but rather an approach to providing health care services in a high-quality and cost-effective manner. Children and their families who have a medical home receive the care that they need from a pediatrician or other health care professional. Pediatricians, families, and allied health care professionals act as partners in a medical home to identify and access all the medical and nonmedical services needed to help children and their families achieve their maximum potential.

Definition of Medical HomeCare that is:AccessibleFamily-centeredComprehensiveContinuousCoordinatedCompassionateCulturally-competent

And for which the pediatrician or health provider:Shares responsibility

THE MEDICAL HOME CONCEPT

Medical Home Child/FamilyMental Health ServicesEducational Services (incl. E.I.)Parent Support ServicesFinancial AssistanceMedical SpecialistsReligious/ Spiritual Support

Why Build Partnerships and Collaborations with Families?Families with high parental involvement are more likely to engage in educational activities with their childrenHighly involved families almost double the positive odds for their childrenAdapted from NJ F2F

Why Build Partnerships with Families?Children with concerned fathers and mothers are more likely to be healthyFamilies with high parental involvement in school and activities are more likely to have high expectations for their children

Barriers to CollaborationProfessional socialization, structure & cultureAgency structure, routine, & cultureLegislative mandates or limitationsProfessional and agency self-interest

Barriers to CollaborationInadequate understanding of strengths & needs of children and familiesInadequate family understanding of the needs & skills of professionals and how to work with themFamily resistance

Parent Attributes that Promote PartnershipsWarmth; NurturanceSensitivityAbility to ListenConsistencyPositive self-imageSense of competencePersonal competenceEffective interpersonal skillsSuccess in prior collaborationsOpenness to others ideas

Professional Attributes that Promote PartnershipsWarmth, NurturanceOpennessSensitivityFlexibilityReliabilityAccessibilityTrustClosenessPositive self-imageChild-centerednessPositive attitudesPersonal competence

Attributes of Successful PartnersConfidence: Feeling able to do itMotivation: Wanting to do itEffort: Being willing to work hard for itResponsibility: Doing whats rightInitiative: Moving into actionPerseverance: Completing what you start

Attributes of Successful PartnersCaring: Showing concern for othersTeamwork: working with othersCommon Sense: Using good judgmentProblem-Solving: Putting what you know and what you can do into actionFocus: Concentrating with a goal in mind

Parent-Professional CollaborationRemember the cultural context for parent-professional relationships:Each knows the child in different contextsDifferent people often have distinct and disparate perspectives on the same issue

Parent-Professional CollaborationSome parents may be comfortable with their role as their childs advocateOther parents may:Be reluctant to express concerns because of cultural beliefs related to authoritative position health professionalsHave difficulty talking because of memories of their own experiencesBe unsure how to express themselvesFear retaliation

Parent Professional CollaborationParents may be surprised to learn that providers are equally anxious about relationships with parentsMost professionals have received very little training in fostering relationships with families

Making it Happen: Building PartnershipsBuild a foundation of good feeling based on a clear and consistent message about the value of the childPut yourself in the other persons shoesPersevere in building partnerships

Making it Happen: Building PartnershipsExpand awareness of cultural diversity; become culturally competentSee individuals; challenge stereotypesDemonstrate an authentic interest in each others goals for the child

Making it Happen: Building PartnershipsDiscuss with each other how information will be sharedUse everyday languageCreate effective forums for effective collaborative planning and problem-solving

Making it Happen: Building PartnershipsSupport the development of long-term plans to offer full membership to all children and all familiesEnsure that building collaborative partnerships is an overarching goal each year!

A Framework for Creating PartnershipsEngage in joint learning activitiesSupport each other in respective rolesCarry out improvement activitiesConduct collaborative projectsParticipate together in decision-making activities

Welcome Families in Varied RolesVolunteers:Welcoming climateSurvey families re: their interests/skillsProvide options to help at various times/placesEnsure activities are meaningfulProvide training for familiesShow appreciationEducate staff members

Welcome Families in Varied RolesProvide understandable, accessible, well-publicized processes:Influence decisionsRaise issues/concernsAppeal decisionsResolve problemsEncourage formation of parent groups to identify & respond to issuesInclude parents in equal numbers on all decision-making & advisory committeesEnsure adequate trainingProvide parents with current informationTreat parent concerns with respect & demonstrate genuine interest in solutions

Establishing a Collaborative Team: Checklist for ProfessionalsDo I really believe that families are my equal, and in fact, are experts on their children?Do I speak plainly and avoid jargon?Do I actively involve families in all team tasks, including developing, reviewing, evaluating and revising plans?

Establishing a Collaborative Team: Checklist for ProfessionalsDo I meet at times and places convenient to the family?Do I respect the values, choices and preferences of the family?Do I share information with other professionals to ensure that families do not expend unnecessary energy accessing services?

Establishing a Collaborative Team: Checklist for ProfessionalsDo I show the same respect for the value of families time as I do for my own time by becoming familiar with pertinent information before team meetings?Do I recognize and enhance the variety of strengths and coping styles of the family?

Establishing a Collaborative Team: Checklist for ProfessionalsDo I encourage the family to bring a friend or advocate?Do I tell each family about how to reach other families in similar situations, recognizing parents as a major source of support and information?

Establishing a Collaborative Team: Checklist for FamiliesDo I believe that I am an equal partner with professionals and do my share of problem-solving and planning to help my child?Do I clearly express my own needs and the needs of my family to professionals in an assertive manner?

Establishing a Collaborative Team: Checklist for FamiliesDo I treat professionals as individuals and avoid letting past negative experiences get in the way of a good working relationship?Do I communicate quickly with professionals when significant changes and events occur?Do I maintain realistic expectations for myself, professionals, and my child?

What can we do for you?You can receive our quarterly newsletter or become a part of our PASS IT ON list servThe list serv is private, sending local, state and national updates

Information and referralWe offer individual assistance and support to families of children with special health needs, as well as the providers who serve themAssistance in navigation of the health system

Publications and AssistanceWe have a wide variety of resource information for families and professionals. Videos, tapes, books etc.Networking linkages: local, regional and national links to assist in information needs

Other areasWorkshops and trainingsLinkage to community resources and assistanceConnecting families to advisory committees and boardsConnecting families with support systems necessary in raising their childrenMuch, much more

How to contact Family Voices North DakotaYou may reach us by phone: 701-493-2634Toll-free: 888-522-9654Fax: 493-2635E-mail: fvnd@drtel.netWeb: http://www.geocities.com/ndfv/

Questions?