Leave No Child With Special Needs Behind

1. 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

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

3. 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

4. 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

5. 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. Family Voices 2003

6. 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

7. Health Payer Systems • Health Insurance • CHIP/Healthy Steps • Medicaid – EPSDT • Children’s Special Health Services • SSI

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

9. Identified Problem • Some requirements vary from county to county, region to region • Families often don’t know or understand the systems and how to navigate within programs • Becomes even more difficult for children with dual diagnosis or utilizing multiple systems

10. What We Know… • We ALL want what is best for kids! • Accessing health systems is very confusing. • Families may get very frustrated! • Systems don’t make access for families easy. • A families ability to advocate the child’s best interest fluctuates dependent upon circumstances

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

12. 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

13. Federally authorized service systems that assist children with special health needs • SSI for Children-Supplemental Security Income-Disable Children’s Program; Title XVI “Sixteen” of the SSA • CHIP/SCHIP—State Children’s Health Insurance Program- Title XXI “Twenty One” of the SSA

14. Federally authorized service systems that assist children with special health needs In North Dakota SCHIP is called “Healthy Steps” • IDEA—Individuals with Disabilities Education Act Part C describes Early Intervention programs for children birth-3 Part B describes Special Education services for children 3-21

15. Developmental Disabilities • Early Intervention (0-3 years of age) • Family Support • Respite • Adult Services Much more…call and ask!

16. 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

17. 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."

18. 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!

19. 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

20. Children’s 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.

21. 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

22. CHIP Continued… • Children ages 0 through 18 • If a child is not living with their parents, only the child’s income is used to determine eligibility. • Eligibility is determined through Adjusted Monthly Income Limits.

23. 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

24. Children’s 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.

25. Children’s 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 child’s impairment or combination of impairments—will be considered disabling if it causes “marked and severe functional limitations.”

26. S.S.I. continued… • Disability is based on the child’s 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. • Parent’s income/assets are considered in the eligibility. Exception: Child has been in a medical facility for a full calendar month.

27. 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

28. 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

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

30. 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.

31. 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.

32. Medicaid Funding Currently, the federal government will pick up more than 50% of the cost, but not more than 75%. North Dakota’s current federal match is 67.49%. Which is a steady decline from previous years

33. 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

34. 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

35. EPSDTEarly & Periodic Screening, Diagnosis, & Treatment • Medicaid’s 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 State’s Medicaid plan

36. States must inform all Medicaid-eligible persons under 21 that EPSDT is available

37. 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.

38. 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

39. 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”.

40. Identified Problem • ND is a 209B state, which means the state has it’s 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

41. 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

42. Other States Waiver Program“Disabled Children’s 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 parent’s income. • Cost of in-home care cannot exceed the costs in a medical facility.

43. 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.

44. 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!

45. 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

46. What is Children’s 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.

47. 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

48. 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

49. 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

50. 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