Presented to the Board of Directors 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, and Paula Noden

What We Will Cover Overview of Three Programs Early Start Prevention Lanterman

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

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 goal is to reduce regional center system expenditures in FY10 Enacted on July 28, 2009 TBL changes made to eligibility criteria and service provision for both Early Start and Lanterman services TBL outlined a new Prevention Program

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

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

Early Start

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

Early Start Eligibility Established Risk Condition 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 Eligibility criteria did not change as a result of the TBL for this category

Early Start Eligibility (cont’d) Developmental Delay Eligibility: Depends on the age of the child Birth to 23 months At least 33% below age level in at least 1 of 5 areas cognition, communication, gross & fine motor, adaptive, social/emotional 24 to 35 months 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 months

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

Early Start Eligibility Timelines 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 Services begin when the initial IFSP is completed NOTE: add elements of assessment and dev of plan and reminder of #s coming in, struggles to meet timelines; highest # in ES across state

Early Start Services Service Coordination Infant Development Programs Occupational/Physical/Speech Therapy Audiology Behavioral Services Family Training Nursing Services NOTE: comment on $$ spent different services

Early Start Program Changes due to Trailer Bill Language Eligibility 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 services Services Use 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 Equipment Examples of non-required services: Most medical services Counseling, social-recreational programs, music therapy

Prevention

Prevention Program Background New Program outlined in the Trailer Bill Language Stakeholder input Expectations Funding Current Unknowns Many 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

Prevention Program (cont’d) Goals of Prevention Program Prevention Services Intake Service Assessment Case management Referral to generic agencies Family Resource Center/Comfort Connection

Prevention Program Eligibility 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 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/emotional

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

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

Lanterman

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

What is a Developmental Disability? Lanterman Act § 54000 and CCR, Title 17 Definitions 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.

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) Approximately 91% of children exiting Early Start at age three are ineligible for Lanterman services

What Conditions are NOT Developmental Disabilities? A Developmental Disability shall not include disabling conditions that are: Solely psychiatric disorders Solely learning disabilities Conditions that are solely physical in nature Blindness Deafness Spinal cord injury Most muscle diseases such as muscular dystrophy (unless in some severe cases where there is a significant cognitve impairment) A learning disability is a condition which manifests as a significant discrepancy between estimated cognitive potential and actual level of educational performance and which is not a result of generalized mental retardation, educational or psycho-social deprivation, psychiatric or sensory loss. Conditions that are solely physical in nature These conditions include congenital anomalies or conditions acquired through disease, accident, or faulty development that are not associated with a neurological impairment that results in a need for treatment similar to that required for mental retardation Translation: An eligible condition must involve the brain (but involvement of the brain does not guarantee eligibility as other eligibility criteria must be met)

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: Originate before age 18 Be likely to continue indefinitely Be due to an eligible diagnosis Must meet severity requirements, i.e., “substantial disabilities” > 3 areas Originate before age eighteen years: Example: Person develops seizure disorder at age 10- may be eligible but if seizures start at age 19  not eligible Usually can be determined but can be difficult especially if applicant is older and recently arrived to the U.S. with little educational and medical records Individual does not have to apply for services before age 18, but there does need to be documentation that the substantially disabling condition was present before age 18

Eligibility Criteria for Lanterman Services (cont’d) Must be due to an eligible diagnosis: Mental Retardation – 78% Cerebral Palsy – 20% Epilepsy – 21% Autism – 25% Fifth Category – Condition like Mental Retardation – 6% (as of 1/31/10) Note: many individuals have more than one diagnosis so the percentage is more than 100%

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) 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 Services

Autism (cont’d) 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. Autistic Spectrum Disorder Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)

Autism (cont’d) 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).

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.” CCR Title 17 definition: “…other conditions similar to mental retardation that require treatment similar to that required by individual with mental retardation.”

Conditions Like Mental Retardation  Fifth Category (cont’d) The legislature did not intend to provide a detailed definition of the 5th 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). Applicants with deficits due solely to physical or psychiatric disorders or environmental factors are not eligible

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. 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. The higher the IQ, the greater the burden of proof is that an applicant is truly functioning like an individual with mental retardation Traumatic brain injury Selected genetic disorders Near drowning victims

Understanding Substantial Disabilities

What Is a Substantial Disability? 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. Must differentiate between “can’t do” a skill or task from “can do but chooses not to”

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

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

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. 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.

Substantial Disability There was a significant change in the statute in 2003 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.”

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

How Is Substantial Disability Determined? No single test determines substantial disability Based on available information History provided by family, caretakers, teachers, therapists, etc. Direct observation Past psychoeducational testing School district evaluations are especially important

How Is Substantial Disability Determined? (cont’d) Past psychoeducational testing Essential objective information Test 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 disability Goodness of fit

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

RCOC’s Approach (cont’d) Information is obtained from: History provided by family members or others Educational and therapy records Medical records Interview/evaluation of applicant by RCOC staff The more information the better, but there are time constraints 120 day timeline for eligibility determination At RCOC, charts are reviewed by a nurse, MD and psychologist with input from the service coordinator Depending on the available information an eligibility decision may be made immediately Note that missing reports, etc. can take the family a LONG time to get to us, usually through no fault of their own

RCOC’s Approach (cont’d) 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 observation of applicant in home, school or community If eligibility status is unclear, we may seek additional information in a number of different ways Interview of applicant’s teachers, therapists, doctors or other professionals who are familiar with them RCOC may pay for additional psychological testing

What Happens Once An Eligibility Decision Is Made? If a child is found ineligible: The family/advocate can appeal the decision through the fair hearing process Families 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 them From our perspective not being eligible for Regional Center Services is a good thing- we don’t think your child or family member has a severe life long disability. What I am also saying is that I don’t think your kid is bad enough to need our services. This can be very difficult for a parent to understand if they have a kid with CP or autism or epilepsy . In fiscal year 2009, there were 138 fair hearings filed with RCOC. Of those, the majority (88 of the 138) were filed to appeal eligibility decisions (68 were for Lanterman eligibility and 20 for Early Start eligibility). NOTE: # FHs versus # ineligible, etc.

What Happens Once An Eligibility Decision Is Made? (cont’d) 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.” There is no support for this view in statute. The child must be substantially disabled in three areas at the time eligibility is being determined

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., A 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 areas

Summary As mandated: Eligible 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 disabilities The criteria that regional centers use are different from those of school districts and other government-funded agencies

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

QUESTIONS??

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

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. True or False? True Regional centers are required to provide services to all individuals with diagnoses of Autism, Cerebral Palsy or Epilepsy. False

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). 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. True