1. Regional Center Eligibility: Early Start, Prevention and Lanterman Services Presented to the Board of Directors on February 4, 2010 by Dr. Peter Himber, Patricia Glancy, Patricia Glancy, and Paula Noden

2. What We Will Cover Overview of Three Programs Early StartEarly Start PreventionPrevention LantermanLanterman

3. Overview of Regional Center Services Regional center services remain an entitlement Regional center services remain an entitlement Most services are free to families (i.e., no cost or no share of cost) Most services are free to families (i.e., no cost or no share of cost) Regional centers are required to seek generic resources including: Regional centers are required to seek generic resources including: CalOptima/MediCalCalOptima/MediCal Private Health InsurancePrivate Health Insurance Orange County Mental HealthOrange County Mental Health Other government programsOther government programs SchoolSchool California Children Services (CCS)California Children Services (CCS) Regional centers are mandated to be the “payor of last resort” Regional centers are mandated to be the “payor of last resort”

4. Trailer Bill Language (TBL) Affecting Regional Centers As part of the Fiscal Year 2009-10 budget reductions, legislative changes were made to the Early Start Program and the Lanterman Act As part of the Fiscal Year 2009-10 budget reductions, legislative changes were made to the Early Start Program and the Lanterman Act goal is to reduce regional center system expenditures in FY10goal is to reduce regional center system expenditures in FY10 Enacted on July 28, 2009 Enacted on July 28, 2009 TBL changes made to eligibility criteria and service provision for both Early Start and Lanterman services TBL changes made to eligibility criteria and service provision for both Early Start and Lanterman services TBL outlined a new Prevention Program TBL outlined a new Prevention Program

5. RCOC Facts and Statistics (as of 12/31/09) 3,146 children receiving Early Start services 3,146 children receiving Early Start services * highest in state 236 children receiving Prevention services 236 children receiving Prevention services 13,428 individuals age 3+ receiving Lanterman services 13,428 individuals age 3+ receiving Lanterman services Average number of new Intake applications per month in CY09– 442 (83% eligible) Average number of new Intake applications per month in CY09– 442 (83% eligible) 0 to 35 months – average 382 (87% eligible)0 to 35 months – average 382 (87% eligible) 36 months and over – average 60 (63% eligible)36 months and over – average 60 (63% eligible) Average number of children exiting Early Start at age 3 per month in CY09- 213 Average number of children exiting Early Start at age 3 per month in CY09- 213 Eligible for Lanterman – average 19Eligible for Lanterman – average 19 Ineligible for Lanterman – average 194Ineligible for Lanterman – average 194

6. Child Find Activities Liaisons to Hospitals and NICUs Liaisons to Hospitals and NICUs Contact with Parent Organizations Contact with Parent Organizations Countywide Health and Developmental Screenings through Prop. 10/Family Support Network Countywide Health and Developmental Screenings through Prop. 10/Family Support Network Physician Outreach Physician Outreach Public Presentations (CCS/CalOptima/ Department of Education) Public Presentations (CCS/CalOptima/ Department of Education) Dissemination of Early Start Brochures Dissemination of Early Start Brochures

7. Early Start

8. Early Start Program Program Defined Program Defined Birth to three yearsBirth to three years GoalsGoals Federal program (underfunded – i.e., last year, CA received $54 million/RCOC spent $48 million)Federal program (underfunded – i.e., last year, CA received $54 million/RCOC spent $48 million) Current Eligibility Categories Current Eligibility Categories Established riskEstablished risk Developmental delayDevelopmental delay Solely low incidenceSolely low incidence

9. Early Start Eligibility Established Risk Established Risk Condition of known etiology with a high probability of intellectual disabilityCondition of known etiology with a high probability of intellectual disability e.g., Down Syndrome, extremely premature baby with a bleeding into the brain and severe brain injury e.g., Down Syndrome, extremely premature baby with a bleeding into the brain and severe brain injury Eligibility criteria did not change as a result of the TBL for this categoryEligibility criteria did not change as a result of the TBL for this category

10. Early Start Eligibility (cont’d) Developmental Delay Developmental Delay Eligibility: Depends on the age of the childEligibility: Depends on the age of the child Birth to 23 months Birth to 23 months At least 33% below age level in at least 1 of 5 areasAt least 33% below age level in at least 1 of 5 areas cognition, communication, gross & fine motor, adaptive, social/emotional cognition, communication, gross & fine motor, adaptive, social/emotional 24 to 35 months 24 to 35 months 50% delay in 1 area or 33% delay in 2 or more areas (listed above)50% delay in 1 area or 33% delay in 2 or more areas (listed above) Note: Prior to TBL a 33% delay in only one area was required from birth to 36 monthsNote: Prior to TBL a 33% delay in only one area was required from birth to 36 months

11. Early Start Eligibility (cont’d) Solely Low Incidence Solely Low Incidence Eligibility: Hearing, vision or orthopedic impairment with normal cognitionEligibility: Hearing, vision or orthopedic impairment with normal cognition These criteria did not change as a result of the Trailer Bill Language These criteria did not change as a result of the Trailer Bill Language Served by the local school districtServed by the local school district

12. Early Start Eligibility Timelines Initial evaluation and assessment and development of the initial Individualized Family Service Plan (IFSP) Initial evaluation and assessment and development of the initial Individualized Family Service Plan (IFSP) Must occur within 45 days from the time of the referral Must occur within 45 days from the time of the referral Services begin when the initial IFSP is completedServices begin when the initial IFSP is completed

13. Early Start Services  Service Coordination  Infant Development Programs  Occupational/Physical/Speech Therapy  Audiology  Behavioral Services  Family Training  Nursing Services

14. Early Start Program Changes due to Trailer Bill Language Eligibility Eligibility Delays must be greater for children 24 to 35 months of age (as mentioned earlier)Delays must be greater for children 24 to 35 months of age (as mentioned earlier) Infants identified as at “High Risk” for developmental delays are no longer eligible for Early Start servicesInfants identified as at “High Risk” for developmental delays are no longer eligible for Early Start services Services Services Use of private insurance “required” for medical services identified in the IFSPUse of private insurance “required” for medical services identified in the IFSP Prohibits regional centers from purchasing non- required services with the exception of Durable Medical EquipmentProhibits regional centers from purchasing non- required services with the exception of Durable Medical Equipment Examples of non-required services: Examples of non-required services: Most medical servicesMost medical services Counseling, social-recreational programs, music therapyCounseling, social-recreational programs, music therapy

15. Prevention

16. Prevention Program Background Background New Program outlined in the Trailer Bill LanguageNew Program outlined in the Trailer Bill Language Stakeholder input Stakeholder input Expectations Expectations Funding Funding Current Unknowns Current Unknowns Many children formerly eligible for Early Start under “High Risk” criteria will be eligible for the Prevention ProgramMany children formerly eligible for Early Start under “High Risk” criteria will be eligible for the Prevention Program Example: NICU babies or young children at high risk of showing delays in development Example: NICU babies or young children at high risk of showing delays in development

17. Prevention Program (cont’d) Goals of Prevention Program Goals of Prevention Program Prevention Services Prevention Services Intake ServiceIntake Service AssessmentAssessment Case managementCase management Referral to generic agenciesReferral to generic agencies Family Resource Center/Comfort ConnectionFamily Resource Center/Comfort Connection

18. Prevention Program Eligibility Two conditions associated with severe prematurity, birth problems or significant illnesses Two conditions associated with severe prematurity, birth problems or significant illnesses e.g., being on a ventilator for 48 hours and/or low birth weight less than 1500 grams, gestational age under 32 weeks (normal =40), seizures, some genetic disorders e.g., being on a ventilator for 48 hours and/or low birth weight less than 1500 grams, gestational age under 32 weeks (normal =40), seizures, some genetic disorders Born to and residing with a parent with a developmental disability 24 to 35 months of age with a 33-49% delay in one area cognition, communication, gross & fine motor, adaptive, social/emotionalcognition, communication, gross & fine motor, adaptive, social/emotional

19. Prevention Program Eligibility Timelines If ineligible for Early Start, Prevention Program eligibility is determined If ineligible for Early Start, Prevention Program eligibility is determined If eligible, Prevention Program Plan (PPP) is developed with family If eligible, Prevention Program Plan (PPP) is developed with family 45-day timeline 45-day timeline Specialized caseload model Specialized caseload model Prevention cases monitored 90 days after initial PPP and every 6 months or sooner if needed Prevention cases monitored 90 days after initial PPP and every 6 months or sooner if needed

20. Prevention Program Recap Current status of Prevention Program Current status of Prevention Program Review of current unknowns Review of current unknowns Funding, etc.Funding, etc. Example of generic prevention services Example of generic prevention services

21. Lanterman

23. Lanterman Act Eligibility Overview PurposePurpose Primarily 3 years and older Primarily 3 years and older What is a developmental disability?What is a developmental disability? What are ineligible conditions?What are ineligible conditions? What constitutes an eligible diagnosis?What constitutes an eligible diagnosis? What constitutes a substantial disability?What constitutes a substantial disability?

24. What is a Developmental Disability? Lanterman Act § 54000 and CCR, Title 17 Definitions Lanterman Act § 54000 and CCR, Title 17 Definitions A disability that is attributable to mental retardation, cerebral palsy, epilepsy, autism or,A disability that is attributable to mental retardation, cerebral palsy, epilepsy, autism or, Disabling conditions found to be closely related to mental retardation or to require treatment similar to that required for individuals with mental retardation.Disabling conditions found to be closely related to mental retardation or to require treatment similar to that required for individuals with mental retardation.

25. What is a Developmental Disability? (cont’d) The eligibility criteria for Early Start services (under age three) are much less stringent than the eligibility criteria for Lanterman Services (over age three) The eligibility criteria for Early Start services (under age three) are much less stringent than the eligibility criteria for Lanterman Services (over age three) Approximately 91% of children exiting Early Start at age three are ineligible for Lanterman services Approximately 91% of children exiting Early Start at age three are ineligible for Lanterman services

26. What Conditions are NOT Developmental Disabilities? A Developmental Disability shall not include disabling conditions that are: A Developmental Disability shall not include disabling conditions that are: Solely psychiatric disordersSolely psychiatric disorders Solely learning disabilitiesSolely learning disabilities Conditions that are solely physical in nature Conditions that are solely physical in nature Blindness Blindness Deafness Deafness Spinal cord injury Spinal cord injury Most muscle diseases such as muscular dystrophy (unless in some severe cases where there is a significant cognitve impairment) Most muscle diseases such as muscular dystrophy (unless in some severe cases where there is a significant cognitve impairment)

27. Eligibility Criteria for Lanterman Services To be eligible, all of the following criteria regarding the Developmental Disability must be met per WIC § 54000 and CCR, Title 17: To be eligible, all of the following criteria regarding the Developmental Disability must be met per WIC § 54000 and CCR, Title 17: Originate before age 18Originate before age 18 Be likely to continue indefinitelyBe likely to continue indefinitely Be due to an eligible diagnosisBe due to an eligible diagnosis Must meet severity requirements, i.e., “substantial disabilities” > 3 areasMust meet severity requirements, i.e., “substantial disabilities” > 3 areas

28. Eligibility Criteria for Lanterman Services (cont’d) Must be due to an eligible diagnosis: Must be due to an eligible diagnosis: Mental Retardation – 78%Mental Retardation – 78% Cerebral Palsy – 20%Cerebral Palsy – 20% Epilepsy – 21%Epilepsy – 21% Autism – 25%Autism – 25% Fifth Category – Condition like Mental Retardation – 6%Fifth Category – Condition like Mental Retardation – 6% (as of 1/31/10)

29. Autism as an Eligible Diagnosis Important note regarding the special education services due to “Autistic- like behaviors” (educational criteria for autism CCR Title 5 - Section 3030g) Important note regarding the special education services due to “Autistic- like behaviors” (educational criteria for autism CCR Title 5 - Section 3030g) Educational criteria are less restrictive than Lanterman criteria → Educational criteria are less restrictive than Lanterman criteria → Many children eligible for special education services due to “autistic-like behaviors” are not eligible for Lanterman Act / Regional Center ServicesMany children eligible for special education services due to “autistic-like behaviors” are not eligible for Lanterman Act / Regional Center Services

31. Autism (cont’d) Diagnosis of autistic disorder is required for eligibility Diagnosis of autistic disorder is required for eligibility Other diagnoses that fall within the “autistic spectrum” are not eligible conditions but could potentially be eligible under the 5th category. Other diagnoses that fall within the “autistic spectrum” are not eligible conditions but could potentially be eligible under the 5th category. Autistic Spectrum DisorderAutistic Spectrum Disorder Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)

32. Autism (cont’d) Other diagnoses that fall within the “autistic spectrum” are not eligible conditions but could potentially be eligible under the 5th category. Other diagnoses that fall within the “autistic spectrum” are not eligible conditions but could potentially be eligible under the 5th category. Asperger’s Syndrome → Very, very few individuals with this disorder are eligible since by definition, there is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills and adaptive behavior (other than in social interaction).Asperger’s Syndrome → Very, very few individuals with this disorder are eligible since by definition, there is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills and adaptive behavior (other than in social interaction).

33. Conditions Like Mental Retardation  Fifth Category Lanterman Act definition: “…disabling conditions found to be closely related to mental retardation or to require treatment similar to that required for individuals with mental retardation, but shall not include other handicapping conditions that are solely physical in nature.” Lanterman Act definition: “…disabling conditions found to be closely related to mental retardation or to require treatment similar to that required for individuals with mental retardation, but shall not include other handicapping conditions that are solely physical in nature.” CCR Title 17 definition: “…other conditions similar to mental retardation that require treatment similar to that required by individual with mental retardation.” CCR Title 17 definition: “…other conditions similar to mental retardation that require treatment similar to that required by individual with mental retardation.”

34. Conditions Like Mental Retardation  Fifth Category (cont’d) The legislature did not intend to provide a detailed definition of the 5 th Category in statute but instead deferred to the judgment of regional center professionals. The legislature did not intend to provide a detailed definition of the 5 th Category in statute but instead deferred to the judgment of regional center professionals. Someone functioning in a manner similar to a person with MR is most likely to have an IQ in the low borderline range (70-74). Someone functioning in a manner similar to a person with MR is most likely to have an IQ in the low borderline range (70-74).

35. Conditions Like Mental Retardation  Fifth Category (cont’d) The higher an individual’s IQ is above 70, the less similar he or she is to a person with mental retardation. The higher an individual’s IQ is above 70, the less similar he or she is to a person with mental retardation. e.g., a person with IQ of 79 is more similar to a person with low average IQ than to a person with MR.e.g., a person with IQ of 79 is more similar to a person with low average IQ than to a person with MR. To be eligible, person must have substantial adaptive deficits in at least three areas that are clearly related to cognitive limitations. To be eligible, person must have substantial adaptive deficits in at least three areas that are clearly related to cognitive limitations.

36. Understanding Substantial Disabilities

37. What Is a Substantial Disability? Lanterman Act Definition Lanterman Act Definition A condition which results in major impairment of cognitive and/or social functioning, representing sufficient impairment to require interdisciplinary planning and coordination of special or generic services to assist the individual in achieving maximum potential. A condition which results in major impairment of cognitive and/or social functioning, representing sufficient impairment to require interdisciplinary planning and coordination of special or generic services to assist the individual in achieving maximum potential. Must differentiate between “can’t do” a skill or task from “can do but chooses not to”Must differentiate between “can’t do” a skill or task from “can do but chooses not to”

38. Areas of Major Life Activity Eligibility requires the existence of significant functional limitations, as determined by the regional center, in three or more major life activity and as appropriate to the person's age

39. Areas of Major Life Activity (cont’d) Learning Learning Receptive and expressive language Receptive and expressive language Self-care Self-care Self-direction (including social skill difficulties) Self-direction (including social skill difficulties) Mobility Mobility Capacity for independent living Capacity for independent living For children > 6 years and adultsFor children > 6 years and adults Economic self-sufficiency Economic self-sufficiency For individuals > age 18For individuals > age 18

40. Areas of Major Life Activity (cont’d) Concepts like “executive functioning skills”, “visual processing,” “motor planning” and “sensory issues” are important only as they relate to functional skills. Concepts like “executive functioning skills”, “visual processing,” “motor planning” and “sensory issues” are important only as they relate to functional skills. Not assessed in determining eligibility because they are not among the adaptive skill areas specified by law.Not assessed in determining eligibility because they are not among the adaptive skill areas specified by law. Similarly, fine motor skill difficulties are only important as they relate to some functional skill. Similarly, fine motor skill difficulties are only important as they relate to some functional skill.

41. Substantial Disability There was a significant change in the statute in 2003 There was a significant change in the statute in 2003 Prior to 2003, only one area of substantial disability was required.Prior to 2003, only one area of substantial disability was required. The area that encompassed language was “communication” which was less restrictive than the current “receptive and expressive language.”The area that encompassed language was “communication” which was less restrictive than the current “receptive and expressive language.”

42. Substantial Disability (cont’d) Bottom line It was significantly easier for an applicant to qualify for regional center services under the Lanterman Act prior to the 2003 changes in statute

43. How Is Substantial Disability Determined? No single test determines substantial disability No single test determines substantial disability Based on available information Based on available information History provided by family, caretakers, teachers, therapists, etc.History provided by family, caretakers, teachers, therapists, etc. Direct observationDirect observation Past psychoeducational testingPast psychoeducational testing

44. How Is Substantial Disability Determined? (cont’d) Past psychoeducational testing Past psychoeducational testing Essential objective informationEssential objective information Test scores need to be very lowTest scores need to be very low Although individuals may function below their expected age level; their deficits may not meet the criteria of a substantial disabilityAlthough individuals may function below their expected age level; their deficits may not meet the criteria of a substantial disability

45. RCOC’s Approach to Eligibility Determination Be fair Be fair Use objective measures and criteriaUse objective measures and criteria Be consistent Be consistent Be thorough Be thorough Follow the law Follow the law

46. RCOC’s Approach (cont’d) Information is obtained from: Information is obtained from: History provided by family members or othersHistory provided by family members or others Educational and therapy recordsEducational and therapy records Medical recordsMedical records Interview/evaluation of applicant by RCOC staffInterview/evaluation of applicant by RCOC staff The more information the better, but there are time constraints The more information the better, but there are time constraints 120 day timeline for eligibility determination120 day timeline for eligibility determination

47. RCOC’s Approach (cont’d) If eligibility status is unclear, RCOC may seek additional information, e.g., If eligibility status is unclear, RCOC may seek additional information, e.g., Direct assessment by RCOC’s M.D.s and/or psychologists via a transdisciplinary assessment (TDA)Direct assessment by RCOC’s M.D.s and/or psychologists via a transdisciplinary assessment (TDA) Direct observation of applicant in home, school or communityDirect observation of applicant in home, school or community

48. What Happens Once An Eligibility Decision Is Made? If a child is found ineligible: If a child is found ineligible: The family/advocate can appeal the decision through the fair hearing processThe family/advocate can appeal the decision through the fair hearing process Families can reapply for regional center services when the child is olderFamilies can reapply for regional center services when the child is older A child who was ineligible at age three due to a lack of three substantial disabilities, may meet the criteria in their teens or young adulthood when more is expected from themA child who was ineligible at age three due to a lack of three substantial disabilities, may meet the criteria in their teens or young adulthood when more is expected from them

49. What Happens Once An Eligibility Decision Is Made? (cont’d) If we say to a family, “You can reapply when your child is older.” If we say to a family, “You can reapply when your child is older.” Parents often reply, “I need services now when my child is age three so that he/she can continue to make progress and not need your services when he/she is older.”Parents often reply, “I need services now when my child is age three so that he/she can continue to make progress and not need your services when he/she is older.” There is no support for this view in statute. The child must be substantially disabled in three areas at the time eligibility is being determinedThere is no support for this view in statute. The child must be substantially disabled in three areas at the time eligibility is being determined

50. What Happens Once An Eligibility Decision Is Made? (cont’d) Some eligible individuals may improve to the point that they may no longer need or are eligible for regional center services, e.g., Some eligible individuals may improve to the point that they may no longer need or are eligible for regional center services, e.g., A child with seizure disorder has surgery so that his/her seizures are well-controlledA child with seizure disorder has surgery so that his/her seizures are well-controlled A child with autism may improve to the point that he/she no longer has “substantial disabilities” in three areasA child with autism may improve to the point that he/she no longer has “substantial disabilities” in three areas

51. Summary As mandated: As mandated: Eligible applicants must have a substantially disabling developmental disability with onset prior to age 18 that is expected to last a life timeEligible applicants must have a substantially disabling developmental disability with onset prior to age 18 that is expected to last a life time A number of conditions are excluded including those that are solely physical, psychiatric disorders or learning disabilitiesA number of conditions are excluded including those that are solely physical, psychiatric disorders or learning disabilities The criteria that regional centers use are different from those of school districts and other government-funded agenciesThe criteria that regional centers use are different from those of school districts and other government-funded agencies

52. Summary (cont’d) 3,146 children receiving Early Start services 3,146 children receiving Early Start services 236 children receiving Prevention services 236 children receiving Prevention services 13,428 individuals age 3+ receiving Lanterman services 13,428 individuals age 3+ receiving Lanterman services Average number of new Intake applications per month in CY09– 442 Average number of new Intake applications per month in CY09– 442 0 to 35 months – average 3820 to 35 months – average 382 36 months and over – average 6036 months and over – average 60

53. QUESTIONS??

54. Board Assessment Questions/Answers Which of the following diagnoses may qualify someone (3 years or older) for regional center services? Which of the following diagnoses may qualify someone (3 years or older) for regional center services? Mental Retardation Mental Retardation Epilepsy Epilepsy Cerebral Palsy Cerebral Palsy Autism Autism Fifth Category (i.e., conditions closely related to mental retardation and requiring similar treatment) Fifth Category (i.e., conditions closely related to mental retardation and requiring similar treatment) All the above All the above

55. Board Assessment Questions/Answers (cont’d) As defined in the Lanterman Act, a person age 3 or older must have substantial disabilities in three or more major life activities to be eligible for regional center services. As defined in the Lanterman Act, a person age 3 or older must have substantial disabilities in three or more major life activities to be eligible for regional center services. True or False? True Regional centers are required to provide services to all individuals with diagnoses of Autism, Cerebral Palsy or Epilepsy. Regional centers are required to provide services to all individuals with diagnoses of Autism, Cerebral Palsy or Epilepsy. True or False? False

56. Board Assessment Questions/Answers (cont’d) All children under 36 months of age are eligible for Early Start services if they have a 33% delay in one of five developmental areas (i.e., cognitive, physical or motor, communication, social or emotional, or adaptive development). All children under 36 months of age are eligible for Early Start services if they have a 33% delay in one of five developmental areas (i.e., cognitive, physical or motor, communication, social or emotional, or adaptive development). True or False? False The Prevention Program is a new program for children under 36 months of age who are at risk of a developmental disability but are otherwise not eligible for Early Start services. The Prevention Program is a new program for children under 36 months of age who are at risk of a developmental disability but are otherwise not eligible for Early Start services. True or False? True