2003 Annual Report

Kentucky’s Part C Program, First Steps, officially changed Departmental oversight on July 1, 2004. On March 1, 2004 the Cabinet for Health Services, now know as Cabinet for Health and Family Services, announced that the daily operations of the First Steps program would remain with the Commission for Children for Special Health Care Needs (CCSHCN), but the authority was being moved to the Department for Public Health (DPH). From March 1, 2004 until June 30, 2004, the CCSHCN carried out the daily functions of the program while the staff in the Department for Public Health oversaw those activities and quickly learned the program mandates. Then on July 1, 2004 the Department for Public Health, Division for Adult and Child Health Improvement took over the daily activities as well as overall program management.

Prior to completely taking responsibility for the program, the DPH assembled a group of stakeholders to help redesign the Part C program in Kentucky. This stakeholder group included Parents, Part C Interagency Coordinating Council members, Higher Education representation, Kentucky Department of Education staff; Part C providers; Legislative Aides and Part C staff. This stakeholder group was charged with streamlining operations, exploring effective ways to provide services and to design ways to keep the First Steps program within its budget. Kentucky has traditionally overspent by several millions of dollars each year. The Administration moved the program, partly due to the budget problems, to make a last attempt at saving the program from termination. The stakeholder group met and adopted three guiding principles:

      Children will receive the supports they need,

      Families will receive the supports they need, and

      We will stay within our budget.

This group looked at every aspect of the program and made recommendations, which resulted in some programmatic changes with others affecting the administration and its budget. These recommendations were instituted in the FFY 04.

Due to the immediate change in the administration, the fact that the program moved from a completely different city, the new staff’s limited knowledge of the program and the distance barrier, the FFY 04 Annual Performance Report will attempt to address the performance during that time period. However, due to lack of records and no central office programmatic staff making the transition, Kentucky’s annual report will present the data it can secure. In areas that data is not available from the required time period (July 1, 2003 - June 30, 2004), we will present activities and data available to show that in FFY 04 we are addressing the issue. OSEP will see where the previous administration did not include specific targets in their FFY 02 Annual Performance Report for this reporting period. They included the statement that the next administration would convene a stakeholder group to look at the Part C program and make changes. Please refer to the Work Group report (attachment Intro 1) for those recommendations.

In order to prepare the Annual Performance Report, Kentucky presented the APR document and instructions to the Interagency Coordinating Council (ICC) at their January 2005 meeting. The ICC members reviewed each cluster and probe, gave recommendations on data sources and overall information to address those items. This information was shared with the APR Core Team to use in the preparation of the report. In addition, the APR was shared with the ICC at their March 2005 meeting for final input and support.

Kentucky created an APR Core Team to facilitate the writing of the Annual Performance plan. This Core Team included the Parent Representation, Part C Coordinator, Part C Section Supervisor, Part C Data Manager, Part C Monitoring Coordinator and Field Staff, Provider Support Field Staff Representation and a staff person from Mid-South Resource and Referral Center.

Department for Public Health

First Steps Program Transition and Redesign

Briefing Paper

5/5/04

Issue: The transfer, redesign and change in organizational leadership of the First Steps Program from the Commission for Children with Special Health Care Needs (CCSHCN) to the Department for Public Health (DPH)/Division of Adult and Child Health (ACH).

Background: First Steps, Kentucky’s Early Intervention Program, has been in existence since the first grant to the federal Office of Special Education (OSEP) in 1988. In 1994, Kentucky made the commitment to full program implementation when the General Assembly passed House Bill 804 and established KRS 200.650 – 200.676. This commitment charged Kentucky to serve children, birth to three years of age who have a suspected developmental delay or a medical condition known to cause a developmental delay. Upon acceptance of the federal grant funding, sixteen services must be made available based on the child and the family’s individual needs. The First Steps Program provides these services. The First Steps grant is applied for annually through the federal Department of Education, Office of Special Education and is Part C of the larger federally mandated special education law called Individuals with Disabilities Education Act (IDEA). First Steps works closely with Kentucky’s Department of Education (KDE) to transition the children leaving First Steps to the Preschool program administered by KDE and funded by OSEP, called Part B of IDEA.

First Steps originally was administered within the Department for Mental Health and Mental Retardation Services and was moved to the CCSHCN in 2001. This move was designed to streamline the services and use the existing CCSHCN programs to support First Steps. Several changes have been made to improve the program regarding services and budget. First Steps makes the annual commitment to OSEP to serve all children that present with developmental delays. The program has been difficult to budget for actual services and expenditures. This has resulted in the First Steps program having budget overruns for many years.

On March 1, 2004, an Administrative Order signed by Cabinet for Health and Family Services (CHFS) Secretary, Dr. Holsinger, moved the administration of First Steps from the CCSHCN to DPH/ACH.

Redesign Process: Dr. Davis, Director, Division of ACH met with Eric Friedlander, Executive Director of the CCSHCN, and his staff to begin the transition process. Additionally, a policy and provider work group was established to address the transition and redesign of the First Steps program. This work group consisted of representatives from all areas of the First Steps program: DPH, Parents, Providers, Interagency Coordinating Council (ICC), LRC and administrative staff including both state and university personnel. This workgroup met, on March 16, 2004 and for one full day per week for six weeks. At their first meeting, the workgroup adopted a set of three guiding principles:

The workgroup asked others to join them at various points where issues needed more information and data. They concluded their work on April 20, 2004 with a commitment to support a set of recommendations (see attached). These recommendations are divided into three timelines:

                                 #1 Immediate – Already implemented,

                                 #2 Short Term – Implementation to begin by July 1, 2004,

                                 #3 Long Term – Implementation to begin by July 1, 2005.

Simultaneously, the central office staff began working with Cabinet leadership and their respective agency staff to develop the First Steps program requirements and how they could be incorporated into existing Cabinet functions. These meetings included review of such items as budget, personnel, regulations, provider enrollment, services, billings and payments.

The staff also met with other state agencies to continue those partnerships and to facilitate the transition regarding their role with First Steps. These activities included meeting with the Kentucky Department of Education (DOE) to discuss co-funded projects, aligning policy, and procedure for transitioning children from First Steps to the DOE mandated preschool services for children with disabilities. Additionally, meetings occurred with partners to work on a system to support needed services to our low-incident populations (children who are Deaf/Hard of Hearing or Blind).

ACH has been requested to provide updates on the progress of the transition to State Representative Tom Burch. Dr. Davis has met with him on two occasions to review our progress, explain the redesign process including the guiding principles, and plans to address the regulations that guide the First Steps program. Cabinet briefings with Undersecretary Birdwhistell and Commissioner Leach occurred to keep them informed of our activities.

Budget:

Revenue FY03                                  Exp FY03

SGF $10.83M                                     $ 38.10M

Tob $ 1.00M

Fed $ 5.56M

MC $16.77M

Fm $ .33M

Other $ .03M

Total $34.52M

Revenue and expenditures show a budget overrun of $3.58M. Transfer of other funds from the CCSHCN and the CHFS were required to balance the budget.

To balance the First Steps budget and maintain continue support for this program policy changes are being recommended, see attachment.

Next Steps: The staff of the First Steps Program will continue to work with CHFS representatives, the ICC and the policy and provider workgroup to carry out the transition and redesign plan recommendations. Appropriate persons have been identified and work dates with deliverables will be established. Continued program status briefings with Undersecretary Birdwhistell, Commissioner Leach and Representative Burch will be scheduled.

The policy and provider workgroup has adopted the guiding principles and put together a redesigned First Steps Program that will meet each of these principles. This will place the program on a "solid foundation", build on successes of the past, and assure continuation of the program well into the future.

First Steps

Transition Plan and Redesign Recommendations

State Goal: The implementation of a comprehensive and coordinated Child Find system results in the identification of all eligible infants and toddlers.

Probe CC I: Is the percentage of eligible infants and toddlers with disabilities that are receiving Part C services comparable to State and national data for the percentage of infants and toddlers with developmental delays?

Performance Indicator: The percentage of eligible children and toddlers with disabilities that are receiving Part C services are comparable to State and national data for the percentage of infants and toddlers with developmental delays.

Baseline/Trend Data:

See Attached:

Table AH1 (attachment CC.I 1)

Monthly POE Report (attachment CC.I 2)

Targets: The previous administration did not include specific targets in their FFY02 Annual Performance Report for this reporting period.

Explanation of Progress or Slippage:

Kentucky’s trend has been to be above the national averages for identifying and providing services for infants and toddlers with developmental delays. For this reporting period that trend continues as can been see in the attached Table AH1, Kentucky provides services to 2.37 % of its population compared to 2.24% for the "50 states and D.C." population.

Kentucky’s Point of Entry (POE) system is organized into fifteen (15) districts that cover the state. Any district with a population density of over one hundred people per square mile is considered urban. There are three (3) districts that are considered to be urban: Bluegrass, KIPDA and Northern Kentucky. The twelve (12) rural districts are: Barren River, Big Sandy, Buffalo Trace, Cumberland Valley, FIVCO, Gateway, Green River, Kentucky River, Lake Cumberland, Lincoln Trail, Pennyrile, and Purchase. The POE offices are staffed with Developmental Interventionist(s) and/or Nurse(s) service coordinators to address both developmental delay and medical needs. The POE service coordinators specialize in intake, assessment and evaluation coordination. POE staffs are also responsible for coordinating all child-find efforts. All of their duties are specified in Kentucky regulation "911 KAR 2:110. Kentucky Early Intervention Program point of entry."

The design of our Point of Entry System staffing is based on a two-year analysis of referral patterns. Point of Entry (POE) offices are staffed based on a national recommendation of 1 staff person per 15 new referrals per month. In addition, the POE staff by regulation (911 KAR 2:110 Section 1 (2) "shall coordinate child find efforts with other state and federal programs serving this population, including maternal and child health programs, early and periodic screening, diagnosis, and treatment programs, Head Start, Supplemental Security Income Program, and programs authorized through the developmental disabilities assistance and Bill of Rights Act". Further in the same regulation Section 1(3), "The POE staff shall develop a child-find activity plan to be constructed in each district that includes: (a) Completing a minimum of two (2) face-to-face contacts per month to potential referral sources in the district to explain First Steps services."

Both number of referrals per month and the required child-find activities are included in a POE report filed monthly. This new report form was developed in February 2004. Report data from 3/04 until 6/04 was not consistently and completely transferred from the previous administration, making meaningful reports or data analysis for this APR reporting period unreliable at this time. POE report design can be seen in Attachment CC.I 2. The fact that Kentucky’s data is not available for this APR reporting period does not seem to be of critical importance at this time as Kentucky is exceeding national averages with regard to data for child find and service delivery. However, Kentucky will continue to collect this data and report it in future APR documents.

With regard to child find, each of Kentucky’s service districts, by statute (KAR 200.662), has a District Early Intervention Committee (DEIC). Each has from fifteen (15) to twenty-five (25) members of whom at least five (5) are parents, at least five (5) are early intervention service providers and at least one representative from each of the following: the local health department, the local office of the Department for Community Based Services, the local community mental health and mental retardation center, and the local Commission for Handicapped Children (in Kentucky this agency is called The Commission for Children With Special Health Care Needs). Other DEIC members may include representatives from: a child day-care facility, a public school, a provider of medical services, a provider of therapy services, a home health agency, a university or college, a family resource center, a local business, a local charity, or others deemed appropriate. All of the members of each DEIC and the agencies they represent collaborate with the Point of Entry on child find activities – they make referrals, share information about First Steps with their contacts and as a DEIC assist in the development of a district child find activities plan. Child find activities are reported by the Point of Entry monthly to the local DEIC and to the administration on the aforementioned POE report (see Attachment CC.1 2)

First Steps administration meets quarterly with Point of Entry staff. Activities at quarterly meetings include helping to identify primary referral sources to include in future Child Find activities. It is also a time for training, sharing ideas and identifying areas for improvement.

Projected Targets:

- - - - - -

Probe CC II: Is the percentage of eligible infants with disabilities under the age of one that are receiving Part C services comparable with State and national data?

Performance Indicator: The percentage of eligible infants with disabilities under the age of one that are receiving Part C services are comparable with State and national data.

Baseline/Trend Data:

See Attached:

Table AH1 (attachment CC.I 1)

In the response letter to Kentucky’s March 31, 2004 submission of its FFY 2002 APR, OSEP asked that the state provide data on the number and source of referrals in rural areas, including the number of referrals from neo-natal follow-up programs.

The total number of neo-natal follow up referrals to First Steps for FY 2003 is as follows:

Number of referrals from University of Kentucky Neo-natal Follow up 40

Number of referrals from University of Louisville Neo-natal Follow up 21

(Note: The referrals from the neo-natal follow-up programs were reported state-wide. They were not reported to First Steps segregated by urban/rural.)

Data concerning the number and source of referrals in rural areas would be found on the monthly POE reports. The Point of Entry report was not developed until February 2004 with implementation in March 2004. Data that was available for rural referrals and sources of referrals is from March 2004 through June 2004 and is as follows:

RURAL DISTRICT NUMBER OF REFERRALS

Barren River 118

Big Sandy 81

Buffalo Trace 33

Cumberland Valley 137

FIVCO 64

Gateway 60

Green River 123

Kentucky River 92

Lake Cumberland 92

Lincoln Trail 157

Pennyrile 86

Purchase 167

Referral Sources for rural areas for that same time period were reported as follows: parents, family members, grandparents, foster parents, physicians, physician assistants, hospitals, Child Evaluation center, health departments, nurses, nurse practitioners, daycare staff, Primary Service Coordinators, Commission for Children with Special Health Care Needs, University of Kentucky Neo-Natal Follow up, University of Louisville Neo-Natal Follow up, Speech-Language Pathologists, Audiologists, Developmental Interventionists, Physical Therapists, Occupational Therapists, Social Services, Psychologists, Head Start program, Early Head Start Program, HANDS program, University of Kentucky Genetics, preschools, Teacher of the Visually Impaired, comprehensive care center, teachers and other point of entry staff.

Targets: No target done by last administration

Most of the children who are referred prior to age 1 are those with Established Risk conditions. During this reporting period, the previous administration had a regulation in place that required Established Risk Children to exhibit delay in order to get therapeutic intervention services (911 KAR 2:120 Section1 (5)(b)2a). Those children could be enrolled with Service Coordination services only; however, many families chose not to enroll if they were not going to be eligible for therapeutic intervention services. When the program transferred to the Department for Public Health on July 1, 2004 that regulation was eliminated in emergency regulation filed on July 1, 2004. The emergency regulation became a final ordinary regulation in January of 2005. Kentucky expects that elimination of that barrier to therapeutic intervention services will improve our under age 1 enrollment numbers in future years.

Projected Targets:

1. The elimination of the regulation that required Established Rick children to exhibit delay will improve Kentucky’s numbers of enrolled children under age one (1).
2. The contracts with the state neo-natal follow-up programs are also an important referral source for children under the age of one (1) and will improve Kentucky’s number of enrolled children under age one (1)

* Inquiry means an exchange of information concerning children birth to 3 years of age and does not result in a case being opened.

**Referral means a case is reopened/opened.

Probe: None

Performance Indicator: IFSPs include necessary family supports and services

See Attached:

CBIS Data: Children receiving Therapeutic Services (attachment

FC 1)

CBIS Data: Children receiving Therapeutic Services/PSC (attachment FC 2)

Program Monitoring information (attachment FC 3)

7 counties POE customer survey results (attachment FC 4 & 5)

7 counties PSC customer survey results (attachment FC 6)

7 counties PSC customer survey comments (attachment FC 7)

Parent Survey from EKU (attachment FC 8)

Targets: The previous administration did not include specific targets in their FFY 02 Annual Performance Report for this reporting period.

Kentucky utilizes a statewide central billing and information system called Central Billing and Information System (CBIS). This system collects services authorized on the child’s IFSP and tracks the billing of those services against the authorized IFSP. The chart labeled "Percent of Children Receiving Therapeutic Services by Discipline" chart (attachment FC 1) shows both urban and rural levels of utilization of the services authorized on the IFSP. This chart shows that children did receive therapeutic services with Service Coordination and Speech topping out at the most service provided. This chart also shows that children from both rural and urban maintained the same level of utilization for each discipline listed, therefore showing that the levels of need for those disciplines were about the same and the availability in both areas are consistent. This chart is not clear on why a higher percentage of services were not utilized, but information revealed during program reviews indicate that services were not provided due to child sickness, parent cancellation, in climate weather, and provider sickness or vacation. Providers are required to document reasons a service was not provided according to the IFSP. There is also evidence through program reviews and provider inquiries to CBIS, of incorrect documents being sent to CBIS regarding collection of the information on service changes or the discontinuance of a service. The chart (attachment FC 2) labeled "Children Receiving therapeutic Services/PSC" shows the child to provider ratio in both the rural and urban setting. In the urban areas, we typically see a 1:10 therapist ratio and at least 1:5 in the rural areas. Ratios for Primary Service Coordinator indicate 21:1 for urban area and 13:1 for rural areas. Kentucky allows Service Coordinators to have up to fifty (50) children on their caseloads with ten (10) of those near transition, but does not dictate therapeutic caseloads. This chart shows that, based on provider/child ratios there are adequate providers in both urban and rural areas to meet the needs for identified services on the IFSP.

Kentucky has a statewide monitoring process to review each enrolled provider for non-compliance. In the reporting period, Kentucky monitored ninety (90) providers (attachment FC 3) and conducted forty (40) follow up visits to confirm they were following their Action Plan to meet compliance. Of those 90 providers reviewed, 32 providers were initially cited for not completing the assessment process within the ten (10) working days of the referral. No provider continued this non-compliance at his or her follow-up review. The IFSP Team utilizes these assessments and other reports to determine the needed services and service levels on the IFSP. This timeframe is enforced and set into regulation. The data collected during this review period showed about a third of the providers not meeting this regulation, therefore suggesting their ability to plan the IFSP could be hindered.

A random sample survey of families from our most urban area (attachment FC 4 & 5) going through the central point of entry system shows that, for at least two (2) quarters during the reporting period, 100% of the families reported that their services were related to their concerns and that the IFSP was based on their priorities. The families surveyed once they left the program (attachment FC 6) reported that they felt that the IFSP was based on their family priorities, 82% strongly agree and 18% agree. Finally, the document "PSC Customer Satisfaction Comments" (attachment FC 7) shows a sample of comments from the survey done in this one district once the child leaves the program. This district uses this information to make program adjustments to better meet the needs of the families in their area.

A random sample survey of families from our most rural area (attachment FC 8) reported that 90% of families felt that they were part of the IFSP team; 75% of their providers were keeping scheduled visits; and 100% of families were satisfied with the First Steps program.

1. Kentucky will continue to collect utilization data with more emphasis on documenting the reasons services are not performed.
2. Kentucky will continue to collect provider/child ratios.
3. Kentucky will continue to monitor for the completion and sending of assessments within the regulated time frames.

- - - - - -

State Goal: All children exiting Part C receive the transition planning necessary to support the child’s transition to preschool and other appropriate community services by their third birthday.

Probe: None

Performance Indicator: All children receive transition planning.

Program Monitoring Report/Transition (attachment T 2)

Targets: The previous administration did not include specific targets in their FFY02 Annual Performance Report for this reporting period.

Kentucky initiated a new Discharge form on October 1, 2003 to collect data on disposition of children at discharge. Primary Service Coordinators complete the form upon a child’s discharge from Part C. The data from October 1, 2003 to June 30, 2004 is reported in Attachment T – 1. This baseline data represents exiting information on 3,160 children. While we are not able to comment on progress or slippage with this baseline data, we do find that only 12% of those children exited with Part B eligibility not determined. Only 2% exited as not eligible for Part B with no other referrals. Seventy percent (70%) exited having met developmental norms or were placed in Part B or another program. The remaining 16% were deceased, withdrawn from the program by parent, moved out of state or the family could not be contacted.

In the response letter to Kentucky’s March 31, 2004 submission of its FFY 2002 APR, OSEP asked that the state submit "data to explain the reason the majority of children exiting Part C do so with eligibility not determined, and strategies to resolve any data discrepancies, and provide updated monitoring data on compliance with the Part C 90-day transition conference and LEA notification requirements at 34 CFR 303.148 (b)(1) and (2)." Our part-year data shown above shows that a majority of children exiting Part C (70%) have met developmental norms or were placed in Part B or another program. A minority of Kentucky’s children (12%) exited with Part B eligibility not determined. This may be due to parents’ indecision about accessing Part B services, inopportunity for parents to meet with Part B due to illness or other family issues, or inaccurate coding on the data collection form by the Primary Service Coordinator. Our strategy to resolve the data discrepancy was to institute a new Discharge Form on October 1, 2003 to more accurately collect data. Kentucky also continues to monitor providers to assure compliance with regulations requiring transition planning for children and families.

Regarding the updated monitoring data that OSEP requested on compliance with the Part C 90-day transition conference, Attachment T – 2 shows that 90 providers were monitored for compliance with Kentucky regulations regarding Transition. During the monitoring process, the Program Evaluator checks to assure that all components of the IFSP/Transition Meeting were completed and documented. Eighteen providers were cited as being out of compliance at the review. At the follow-up visit all of those 18 providers were found to have corrected the non-compliance.

With regard to LEA notification requirements, Kentucky Part C currently sends a quarterly non-identifying list of children who may be eligible for Part B services upon their third birthday to each appropriate local school district. This non-identifying list assigns a number to each child that does not change and follows the child if he/she moves. This allows local districts to "track" children as they approach their third birthday. The list gives the child’s gender, the month and year the child will turn 3 and the services that the child and family currently receive. The purpose of the non-identifying list is to help the district anticipate the needs of children whose parents have not released their children’s information. If/when the parents agree to release their child’s information, it is given to the appropriate district. This system has not proven to be very effective and for that reason, Kentucky applied for and has received a GSEG addressing Transition. It is further described in the "Future Activities" section of this cluster.

1. Kentucky will continue to collect discharge data to assure that transition needs are met.
2. Kentucky will continue to monitor providers to assure compliance with regulations regarding transition.

ATTACHMENTS

Attachment T 1 - Children Exiting in FY04

Attachment T 2 - Monitoring Report