Leave No Child With Special Needs Behind

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Leave No Child With Special Needs Behind

• Sponsored 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

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Today

• Federal and State issues of children with special
  health needs
• Parent/Professional Collaboration
• Moving Forward

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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

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About Children and Youth with Special Health Care
Needs

• Children 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 generally
• Definition developed by Maternal and Child Health
  Bureau July 1998

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Health Care

• Approx. 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.

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Introduction

• Children with Special Health Care Needs
• Impacted by the most systems
• Impact the whole family
• May have insurance or funding streams
• Need to understand all the systems available

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Health Payer Systems

• Health Insurance
• CHIP/Healthy Steps
• Medicaid EPSDT
• Childrens Special Health Services
• SSI

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Systems

• Every system has.
• Eligibility Requirements
• Processes Procedures for Obtaining Services
• Language, Terms Definitions
• Appeals Processes

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Identified Problem

• Some requirements vary from county to county,
  region to region
• Families often dont know or understand the
  systems and how to navigate within programs
• Becomes even more difficult for children with
  dual diagnosis or utilizing multiple systems

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What We Know

• We 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

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Umbrella of Services

• Health Systems
• Developmental Disabilities
• School Services
• Vocational Rehabilitation
• Dept. of Social Services

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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 CSHS
• Medicaid-refers to Title XIX Nineteen of the SSA

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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 SSA
• CHIP/SCHIPState Childrens Health Insurance
  Program- Title XXI Twenty One of the SSA

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Federally authorized service systems that assist
children with special health needs

• In North Dakota SCHIP is called Healthy Steps
• IDEAIndividuals with Disabilities Education Act
  Part C describes Early Intervention programs for
  children birth-3
• Part B describes Special Education services for
  children 3-21

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Developmental Disabilities

• Early Intervention (0-3 years of age)
• Family Support
• Respite
• Adult Services
• Much morecall and ask!

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Identified Problem

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

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Federal Definition

• Federal Definition of Developmental Disabilities
•  According 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."

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School Services

• Schools
• IDEA-federal law ensuring FAPE (Free and
  Appropriate Public Education)
• IFSP (0-3)
• Part C within IDEA
• IEP (3-up to 21)
• 504

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

• Many families do not know their rights under
  IDEA, especially true after re-authorization
• No Child Left Behind has added another layer of
  difficulty for children with special health care
  needs
• Many families and professionals do not understand
  Section 504
• Understanding of transition is difficult,
  including VR services
• Federal proposals for decrease in VR funding

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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.

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CHIP

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

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CHIP Continued

• Children ages 0 through 18
• If 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.

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Identified Problem

• SCHIP, although comprehensive for CYSHCN does not
  cover as well as Medicaid
• Federally, funding for this program can easily
  disappear
• Eligibility is 140 FPL, leaving little
  difference between 133 of Medicaid eligibility
• Still gaps

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Childrens Social Security Income (SSI) Program

• Is 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.

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Childrens SSI Program

• Enrolling 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.

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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.

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Identified Problem

• While many children with special health care
  needs are deemed MEDICALLY eligible for SSI in
  ND, very few receive SSI in ND
• When 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

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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

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Medicaid

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

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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.

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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.

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Medicaid Funding

• Currently, 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

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Eligibility for Medicaid

• Some of the Doors to Access Medicaid
• Medically Needy
• TANF
• SSI
• SPED programs
• No matter what door.
• ALL Children are eligible for EPSDT

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EPSDT Early Periodic Screening Diagnosis and
Treatment/ND Health Tracks

• For children birth up to 21
• The screen is the first step to accessing EPSDT
  services
• The screen is a HEAD to TOE
• unclothed physical exam
• Must prove medical necessity
• Additional benefits when justified

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EPSDTEarly Periodic Screening, Diagnosis,
Treatment

• Medicaids comprehensive preventive health
  program for children under 21
• Provides screening services at
  medically-appropriate intervals
• Provides medically necessary health care services
  even if the service is not available under
  States Medicaid plan

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States must inform

• all Medicaid-eligible persons under 21 that EPSDT
  is available

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Medicaid

• Children 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.

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EPSDT - lead poisoning prevention

• Required component of screening
• All children at 12 and 24 months
• Children over 24 months if no record of previous
  test
• Medically-necessary diagnostic and treatment
  services must be provided to child with elevated
  blood lead level

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Title XIX

• is 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.

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Identified Problem

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

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ObtainingMental HealthServices

• Identified Problems
• Mental Health vs. Physical Health
• Dual Diagnoses
• Mental Health Parity needed
• Families often have few options, in some cases
  relinquishing custody of their child in order to
  receive services

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Other States Waiver ProgramDisabled Childrens
Program/Katie Beckett Waivers

• Children 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.

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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.

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Why is a Waiver So Important?

• Private insurance is not comprehensive for many
  of these children, having caps and limits on
  services
• Children with significant needs need a
  combination such as a waiver to assist them
• Families are having to impoverish themselves,
  file bankruptcy, divorce, institutionalize, and
  garnish custody in some cases to obtain services
• The needs are HUGE!

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New News

• Legislative session authorized the development of
  a waiver for medically needy children, limited in
  number
• Authorization of study regarding children with
  special health care needs
• Added Russell Silver Syndrome to CSHS program

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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.

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Title V CSHCN Programs

• To provide and promote family-centered, community
  based, coordinated care for children with special
  health care needs
• To facilitate the development of community based
  systems of services for children with special
  health care needs

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Title V CSHCN Programs

• To 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

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Identified Problem

• Federal cuts to the program, also reduces the
  state match
• This could mean potentially changes in service
  delivery, changes to programs and possibly a
  decrease in the number of children served

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Transition Realities

• 90 of YSHCN reach their 21st birthday
• 45 of YSHCN lack access to a physician who is
  familiar with their health condition
• 30 of 18 to 24-year-olds lack a payment source
  for health care
• Many youth lack access to primary and specialty
  providers

CHOICES Survey, 1997 NOD/Harris Poll, 2000 KY
TEACH, 2002
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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 eligibility
• YSHCN are 3 times more likely to live on income
  under 15,000

NOD/Harris Poll Survey, 2000
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Transition Realities (contd)

• Interruptions in
• Social/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
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Identified Problems

• Transition is not just about education, it
  involves the health, recreation, independent
  living and work
• Families and youth need to know their rights and
  responsibilities early
• Services for youth also change.. meaning having
  to learn an entire new system

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Moving forward

• Many disability organizations deal in one way or
  another with many of these issues
• Partnering with families and family organizations
  is essential
• Working together, provides increased empowerment

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The Future of Health Care for Children with
Special Health Care Needs

• Trends in health care that each state will be
  required to implement by the year 2010.

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Healthy People 2010 Goals/Presidents New Freedom
Initiative As They Relate to CYSHCN

• Family Participation and Satisfaction in
  Decisions Around Care
• Access to Affordable Insurance
• Early and Continuous Screening
• Easy-to-Access Community-based Service Systems
• Services Necessary to Transition to Adulthood
• Access to a Medical Home

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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.
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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.

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Definition of Medical Home

• Care that is
• Accessible
• Family-centered
• Comprehensive
• Continuous
• Coordinated
• Compassionate
• Culturally-competent
• And for which the pediatrician or health
  provider
• Shares responsibility

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THE MEDICAL HOME CONCEPT
Medical Specialists

Educational Services (incl. E.I.)
Religious/ Spiritual Support
Medical Home Child/Family
MentalHealthServices
ParentSupportServices
Financial Assistance
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Why Build Partnerships and Collaborations with
Families?

• Families with high parental involvement are more
  likely to engage in educational activities with
  their children
• Highly involved families almost double the
  positive odds for their children

Adapted from NJ F2F
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Why Build Partnerships with Families?

• Children with concerned fathers and mothers are
  more likely to be healthy
• Families with high parental involvement in school
  and activities are more likely to have high
  expectations for their children

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Barriers to Collaboration

• Professional socialization, structure culture
• Agency structure, routine, culture
• Legislative mandates or limitations
• Professional and agency self-interest

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Barriers to Collaboration

• Inadequate understanding of strengths needs of
  children and families
• Inadequate family understanding of the needs
  skills of professionals and how to work with them
• Family resistance

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Parent Attributes that Promote Partnerships

• Warmth Nurturance
• Sensitivity
• Ability to Listen
• Consistency
• Positive self-image
• Sense of competence
• Personal competence
• Effective interpersonal skills
• Success in prior collaborations
• Openness to others ideas

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Professional Attributes that Promote Partnerships

• Warmth, Nurturance
• Openness
• Sensitivity
• Flexibility
• Reliability
• Accessibility
• Trust
• Closeness
• Positive self-image
• Child-centeredness
• Positive attitudes
• Personal competence

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Attributes of Successful Partners

• Confidence Feeling able to do it
• Motivation Wanting to do it
• Effort Being willing to work hard for it
• Responsibility Doing whats right
• Initiative Moving into action
• Perseverance Completing what you start

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Attributes of Successful Partners

• Caring Showing concern for others
• Teamwork working with others
• Common Sense Using good judgment
• Problem-Solving Putting what you know and what
  you can do into action
• Focus Concentrating with a goal in mind

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Parent-Professional Collaboration

• Remember the cultural context for
  parent-professional relationships
• Each knows the child in different contexts
• Different people often have distinct and
  disparate perspectives on the same issue

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Parent-Professional Collaboration

• Some parents may be comfortable with their role
  as their childs advocate
• Other parents may
• Be reluctant to express concerns because of
  cultural beliefs related to authoritative
  position health professionals
• Have difficulty talking because of memories of
  their own experiences
• Be unsure how to express themselves
• Fear retaliation

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Parent Professional Collaboration

• Parents may be surprised to learn that providers
  are equally anxious about relationships with
  parents
• Most professionals have received very little
  training in fostering relationships with families

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Making it Happen Building Partnerships

• Build a foundation of good feeling based on a
  clear and consistent message about the value of
  the child
• Put yourself in the other persons shoes
• Persevere in building partnerships

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Making it Happen Building Partnerships

• Expand awareness of cultural diversity become
  culturally competent
• See individuals challenge stereotypes
• Demonstrate an authentic interest in each others
  goals for the child

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Making it Happen Building Partnerships

• Discuss with each other how information will be
  shared
• Use everyday language
• Create effective forums for effective
  collaborative planning and problem-solving

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Making it Happen Building Partnerships

• Support the development of long-term plans to
  offer full membership to all children and all
  families
• Ensure that building collaborative partnerships
  is an overarching goal each year!

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A Framework for Creating Partnerships

• Engage in joint learning activities
• Support each other in respective roles
• Carry out improvement activities
• Conduct collaborative projects
• Participate together in decision-making activities

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Welcome Families in Varied Roles

• Volunteers
• Welcoming climate
• Survey families re their interests/skills
• Provide options to help at various times/places
• Ensure activities are meaningful
• Provide training for families
• Show appreciation
• Educate staff members

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Welcome Families in Varied Roles

• Include parents in equal numbers on all
  decision-making advisory committees
• Ensure adequate training
• Provide parents with current information
• Treat parent concerns with respect demonstrate
  genuine interest in solutions

• Provide understandable, accessible,
  well-publicized processes
• Influence decisions
• Raise issues/concerns
• Appeal decisions
• Resolve problems
• Encourage formation of parent groups to identify
  respond to issues

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Establishing a Collaborative Team Checklist for
Professionals

• Do 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?

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Establishing a Collaborative Team Checklist for
Professionals

• Do 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?

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Establishing a Collaborative Team Checklist for
Professionals

• Do 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?

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Establishing a Collaborative Team Checklist for
Professionals

• Do 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?

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Establishing a Collaborative Team Checklist for
Families

• Do 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?

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Establishing a Collaborative Team Checklist for
Families

• Do 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?

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What can we do for you?

• You can receive our quarterly newsletter or
  become a part of our PASS IT ON list serv
• The list serv is private, sending local, state
  and national updates

86
Information and referral

• We offer individual assistance and support to
  families of children with special health needs,
  as well as the providers who serve them
• Assistance in navigation of the health system

87
Publications and Assistance

• We 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

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Other areas

• Workshops and trainings
• Linkage to community resources and assistance
• Connecting families to advisory committees and
  boards
• Connecting families with support systems
  necessary in raising their children
• Much, much more

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How to contact Family Voices North Dakota

• You may reach us by phone [phone]
• Toll-free 888-522-9654
• Fax [phone]
• E-mail fvnd_at_drtel.net
• Web http//www.geocities.com/ndfv/

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Questions?