ECT answers questions

Responses to Questions from Rick Outzen

Where are you getting the statistic that “Black toddlers are five times less likely than their white counterparts?”

The study was initially published in the Journal of Developmental and Behavioral Pediatrics and was most recently cited by The Hechinger Report in an article entitled “Black and Latino infants and toddlers often miss out on early therapies they need: Early intervention services provided by states have wide gaps in access and quality” by Sarah Carr, March 7, 2023 https://hechingerreport.org/black-and-latino-infants-and-toddlers-often-miss-out-on-early- therapies-they-need/

Response: Thank you.

What is the data for Escambia County?

Part of the problem is that the data regarding children with developmental delays is not currently coordinated. Each agency serving these children holds their own data. The proposed Help Me Grow project would enable agencies across the county to share data, which would better inform practices. The data we do have readily available that gives us a baseline are as follows:

Current gaps in services for young children who are underserved or referred too late show up in our county data on students with disabilities:

Children of color who could benefit from early intervention evaluation and services often do not have sufficient access to them. The following chart shows disparities in students with disabilities by race, compared to the total population:

Response: The magnitude of the problem begs for pilot programs to figure out how to best deal with it.  Remember it’s about the greatest return on investment and performance metrics.

How many children in Attucks Court and Oakwood Terrace have developmental delays?

We currently have no way of knowing the exact number of children in these neighborhoods who have developmental delays, as this information is not available. Public data around developmental delays and related interventions is limited in general. A 2021 report entitled “Our Youngest Learners” issued by The Education Trust, states “Limited public data about recipients and potential recipients of early intervention services paints an incomplete picture of the extent of racial and ethnic inequities in access to such services. States are required by the federal government to collect, report, and publish some information about children who are found eligible for early intervention services, as well as recipients of those services, including the number and percentage of children participating, the settings in which they participate, and information about exiting Part C services and about dispute resolution. Some of this data is disaggregated by race, ethnicity, and gender, but it is not disaggregated by income level or dual language learner status. Information pertaining to children who are not enrolled in Part C services, but who are identified, referred, and evaluated, is collected by states, but there is wide variation in the public accessibility of that data.”

Response: The two ways to find how many children in these neighborhoods have developmental delays are: 1) Visit the Attucks Court and Oakwood Terrace and talk to the residents; 2) Pay for a provider to conduct screenings (See my earlier posts)

Have you met with parents in those neighborhoods and asked them what they need? I understand you “want to hear from the parents of the children in need and from the frontline providers who work directly with them,” but have you gone into their neighborhoods and schools and listened to parents?

Yes. We plan to do another round of listening sessions for our upcoming mental health initiative. Would you like to be invited to these to hear the feedback next time?

How are these parents currently interacting with early intervention services?

Right now, parents typically start with their pediatrician or school personnel if or when they notice any kind of delay or disability. Then the healthcare provider may or may not conduct a screening, and the parent may or may not receive a referral for services. If a screening is done and a referral is made, then the parent has to coordinate that referral. Currently, two of our local agencies accepting referrals have more than 500 children on their waitlists just to get in the door. Occupational therapy and speech therapy waitlists are the longest. Children with behavioral health issues are off the charts. Providers are telling us that behaviorally challenged children are the norm now. One major provider, the Center for Pediatric Rehabilitation, closed last month, leaving an even larger gap in services for children. (In addition, at a recent meeting of state early intervention coordinators, it was reported that 75% of states have wait lists for the critical early therapies (PT, OT, ST) that are provided as part of the Part C early intervention system of services authorized under the Individuals with Disability Education Act update of 1986.)

Response: Based on the waitlist and lack of providers, Escambia County doesn’t have the capacity to take care of more children, even if properly screened. What is the role of ECT in this situation?

Has any organization run an early intervention pilot program in these neighborhoods? What has worked? What hasn’t?

No local organization has had the funding to pilot a program in Escambia County specific to early identification and intervention. There have been very few, limited investments in this space to date. Local providers have wanted to implement Help Me Grow model in the county since

2017-18, but the funding from the state was cut significantly when it was transitioned to the Children’s Forum for administration. The Help Me Grow program is a national evidence-based model that has been adopted in 13 regions across Florida.

If the early intervention programs in Escambia County are failing or inadequate, why?

The following statement is from the Children’s Services Director at The Arc Gateway, Inc.:

“When children receive services, there are reports of success, such that 1 out of 3 children do not later require special education at kindergarten. (Zero to Three Early Experiences Matter Policy Guide of 2014). The problem is finding the children through developmental screening and having the capacity to then provide services. There is a critical shortage of pediatric speech, physical, and occupational therapists in our community to address the current need, much less address expansion of services under the existing Medicaid and State Early Intervention rates. As a provider of Part C early intervention services for more than 37 years, I can report that the state Early Steps funding for early intervention services have been stagnant since the Department of Health/ Children’s Medical Services became the lead agency for implementation in 1986, with no increases to providers. Medicaid rates for physical, occupational and speech therapy services have had less than a 5% increase since 1989. This year’s increase was the first in approximately seven years and equates to <1% increase.

At my program alone, 53% of our services in the past year have been provided to children who are funded by Medicaid, indicating a large proportion of children who are living in poverty, However, because of the funding crisis this creates, we are having to look at our service mix more closely so we can continue to afford providing services.”

In addition, the Lead Service Coordinator with our local Early Steps program stated:

“Furthering the evidence of disparity in the demographics of the 32505 zip code, 103 Black children received at least an initial IFSP while 251 White children received an IFSP. In contrast, the community makeup of this zip code is more than 53% Black.”

Response: ECT could fund pilot programs – test, modify and perfect them, then expand them. Until we do pilot programs, we can’t develop successful solutions.

What concerns have the frontline providers shared with you about Help Me Grow?

The only concerns we have heard have been based on misinformation or untruths. There is a misconception that this coordinated system of care is simply a hotline or duplicative of 211. It is neither. The centralized telephone access point is a tiny part of the model. Approx. 90% of referrals to the system come from pediatricians. There was also concern that this duplicates work done by the local federally qualified health center, which coordinates its own internal services. While this is similar, it is more robust, pulls in many more services, and is an asset to pediatricians because of the feedback loop it puts in place. Families are touched an average of ficve times by the Help Me Grow program. Most participating pediatricians across the state are from FQHCs. All other providers we have met with are incredibly supportive of the initiative, including our own Board member, retired and well-respected local pediatrician Dr. Rex Northup. Dr. Northup personally met with at least 20 colleagues to help us develop the ITB. (As an aside, the Help Me Grow model itself was designed by a pediatrician, Dr. Paul Dworkin in Hartford, CT, in 1997.)