State and Federal Programs for Children and Youth with Special Health Care Needs Rishi Agrawal, MD, MPH Conflict of Interest Disclosures for Rishi Agrawal, MD, MPH Grant/Research Support Consultant Speakers Bureau Stock Shareholder Other (identify) Nothing to disclose Nothing to disclose Nothing to disclose Nothing to disclose Nothing to disclose 1
Introduction Children and Youth with Special Health Care Needs can benefit from a complex alphabet soup of state and federal programs EI, SSI, DSCC Core, DSCC Home Care, NPCS, DRS Waivers, DDD Children s Support Waiver What should a physician know? Enough to recognize, refer, and advocate Case 1 An 18-month-old girl with significant motor and speech delays is having trouble getting adaptive equipment (such as a gait trainer) and speech therapy covered by the family s private insurance 2
Early Intervention Services more than just therapy! Physical, occupational, and speech therapies Social work Care coordination services Psychological services Audiology and vision services Transportation reimbursement Diagnostic medical evaluations Nursing checks or nutritionist visits Assistive technology devices and services Eligibility for Early Intervention Birth to age 3 Child must have or be at risk for developmental delays Income is not considered to enroll Higher income families pay a monthly copay Families with insurance should apply 3
Case 2 A 4-year-old boy with a seizure disorder and hearing impairment is having trouble financially affording hearing aids. His mother has been having difficulty coordinating his care and services since he graduated from Early Intervention one year ago. Division of Specialized Care for Children (DSCC) Core Program State Title V CYSHCN program Services Provided Diagnostic evaluation and care coordination Equipment Therapies Medical/surgical services 4
Eligibility for DSCC Core Program Age birth to 21 years Medically eligible with orthopedic, nervous system, cardiovascular, hearing, speech, eye, or urinary system conditions, or certain congenital anomalies (e.g. cleft lip/palate), inborn errors of metabolism, cystic fibrosis, or hemophilia All medically eligible children receive evaluation and care coordination services Families under 285% of poverty line receive additional services DSCC Reimbursement to Primary Care Physicians Must be DSCC medical home provider Telephone calls (CPT codes 99371-99373) Care plan oversight (CPT codes 99339-99340) Prolonged services that do not require direct patient contact (CPT codes 99358-99359) Team conference codes (CPT codes 99361-99362) Other office-based services 5
Case 3 A 4-month-old ex-25-week preemie is about to be discharged and will need follow-ups with cardiology, GI, developmental clinic, and ophthalmology. The family lives 100 miles from the hospital and will be unable to drive to appointments due to high gas prices. The mother lost her job while caring for her child in the NICU. Supplemental Security Insurance [SSI] Monthly cash benefit(up to $698/month in 2012) Presumptively Medically Eligible HIV infection Cerebral Palsy Deafness/blindness Severe Mental Retardation Extreme Low Birth Weight Other conditions may also qualify Asthma ADHD Other conditions: http://www.ssa.gov/disability/professionals/bluebook/childhoodlistings.htm Financially eligible - income and asset tests 6
Recap of Services Early Intervention DSCC Core Ages Medical Financial Services 0-3 Developmental delay or risk 0-21 Qualifying medical condition SSI 0-18 Qualifying medical condition None Higher income pays copay None for care coordination 285% poverty level for full program Low income Income and asset test Therapies, social work, psychological, audiology, vision, transportation, equipment Evaluation, care coordination, equipment, therapies, medical/surgical services Cash benefit Case 4 4-year-old boy with severe autism and mild cerebral palsy. He is cared for by a single parent who works part-time. The child has unmet needs for behavioral services and respite care. 7
Potential Programs Division of Rehabilitation Services (DRS) Waivers Division of Developmental Disabilities (DDD) Children s Support Waiver Division of Rehabilitation Services 3 Medicaid Waivers Home Services (primarily physical disabilities) HIV/AIDS Brain Injury Services Personal Assistants and Homemaker services Care coordination Home modification Respite Home health nursing Assistive equipment 8
Eligibility for DRS Programs All ages eligible Medical eligibility based on functional status Asset test with variable income Children s Support Waiver Services Case management Home modification Adaptive equipment and technology Behavioral modification and treatment Respite Services valued at up to double the SSI benefit (currently $1274 per month) Secondary Medicaid 9
Eligibility for Children s Support Waiver Ages 3 to 21 years No income requirements Cognitively impaired (IQ<70) or lifelong condition such as epilepsy, autism, or cerebral palsy Preferences children with behavioral problems Uses Prioritization of Urgency of Need for Services (PUNS) waiting list Recap of Services Ages Medical Financial Services DRS Services All Physical disabilities HIV/AIDS Brain injury Children s Support Waiver 3-21 Cognitive impairment (IQ<70) Lifelong conditions such as epilepsy, cerebral palsy, autism Variable income Asset test No income restrictions Personal assistant, homemaker, respite, home modification, limited nursing, equipment, limited by level of disability Case management, home modification, equipment, respite, limited by set amount per month (double SSI), secondary Medicaid 10
Case 5 A 6-year-old boy with spastic quadriplegia and a G-tube develops upper airway obstruction and has a tracheostomy placement. He lives at home with parents who are both employed and request nursing services for home and school. Potential Programs Division of Specialized Care for Children [DSCC] Home Care Waiver Medicaid Nursing and Personal Care Services [NPCS] PDN Private Duty Nursing (PDN) Program 11
DSCC Home Care Services Nursing Care (LPN or RN) Care Coordination Home Modification Respite Care Equipment Secondary Medicaid Eligibility for DSCC Home Care Waiver Medicaid Waiver Ages birth to 21 Medically fragile Technology dependent Trach +/- Vent Central line on TPN No income requirements 12
NPCS Services Nursing only May apply for other waiver programs to get additional services Eligibility for NPCS Program For children already enrolled in Medicaid (including any form of AllKids) Medically eligible, but less stringent than DSCC Home Care Waiver Financially eligible for Medicaid 13
Recap of Services Financial Medical Services DSCC Home Care NPCS None Financially eligible for Medicaid, including AllKids Stringent Medically Fragile and technology dependent Vent, Trach, TPN Looser criteria Medically needy Nursing Care, Care Coord., Respite, Home Modification, Equipment, Medicaid Coverage Nursing only How to obtain services Early Intervention Administered by local Child and Family Connections offices Parent or physician may refer Call 1-800-323-4769 DSCC Core Program Families submit an application to regional DSCC office Call 1-800-322-3722 DSCC Web site: http://www.uic.edu/hsc/dscc SSI Families contact local Social Security office Call 1-800-772-1213 14
...continued DRS Programs Call 800-843-6154 to find local Office of Rehabilitative Services Home services counselor comes to the home to assess eligibility Website: http://www.dhs.state.il.us/ors Children s Support Waiver Families must complete the PUNS form at a local DDD office, known as Independent Services Coordination (ISC) offices Call 1-888-DDPLANS Website: http://www.dd.illinois.gov...continued DSCC Home Care Program Families need to submit an application to their regional DSCC office Call 1-800-322-3272 Website: http://www.uic.edu/hsc/dscc Physicians need to write a comprehensive letter of medical necessity NPCS A provider or nursing agency calls 1-217-524-7340 A letter of medical necessity must be faxed to Illinois HFS, Division of Home Care, fax: 1-217-524-0099, attn. Shari Bangert 15
Resources All discussed programs with with relevant contact information on CMH Online CME website in Fall 2007 edition of The Child s Doctor. www.childrensmemorial.org/cme The Arc of Illinois Family to Family Information Center Lifespan project www.thearcofil.org But Wait! IL budget cuts leading to reviews of these programs Medicaid Reform Law Medicaid limited to 300% FPL Review of waiver programs 16
Conclusions Many resources available, but few are well advertised. Ideally, application and enrollment spearheaded by the medical home. Physicians can make an extraordinary difference in patient s lives by recognizing, referring, and advocating 17