1. 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

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

3. 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”

4. Trailer Bill Language (TBL) Affecting Regional Centers
As part of the Fiscal Year 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

5. 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 CY
Eligible for Lanterman – average 19
Ineligible for Lanterman – average 194

6. 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

7. Early Start

8. 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

9. 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

10. 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

11. 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

12. 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

13. 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

14. 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

15. Prevention

16. 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

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

18. 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

19. 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

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

21. Lanterman

23. 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?

24. What is a Developmental Disability?
Lanterman Act § 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.

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)
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:
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)

27. Eligibility Criteria for Lanterman Services
To be eligible, all of the following criteria regarding the Developmental Disability must be met per WIC § 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

28. 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%

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)
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

31. 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)

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.
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.”
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 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

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.
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

36. Understanding Substantial Disabilities

37. 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”

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
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

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.
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.

41. 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.”

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
Based on available information
History provided by family, caretakers, teachers, therapists, etc.
Direct observation
Past psychoeducational testing
School district evaluations are especially important

44. 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

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

46. 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

47. 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

48. 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.

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.”
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

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.,
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

51. 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

52. 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

53. QUESTIONS??

54. 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

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