By Teddy Robertson
January 2020 marks the first year of operation for Flint’s Neurodevelopmental Center for Excellence (NCE), a service of Genesee Health System (GHS) for neuropsychological assessment of children impacted by Flint’s water crisis.
But while the Center may be just one year old, GHS visualized its need five years ago, said Dr. Lauren Tompkins, vice president of clinical operations. As Genesee County’s public mental health provider for over 50 years, formerly known as Community Mental Health, GHS — like the medical community — was very aware of the dangers of lead exposure and its harm as a neurotoxin.
“When the Genesee Health System first began interfacing with the community over the water crisis [in 2014-2015], the state asked what we would like to see done,” Tompkins said.
“We had a long list, but one item was to provide neuropsychological testing for children exposed to lead to assess consequences for brain development, behavior, and learning support needs.”
A $3 million start-up fund, the result of the settlement of an ACLU class action lawsuit on behalf of Flint kids exposed to lead, has facilitated work with 283 clients so far — an initial group who have “engaged in or completed the neurological assessment process,” according to Renee Keswick, GHS manager for communication and public relations. NCE staff say requests for their services spiked in August and September, and there is a waiting list.
The annual budget for the Center is about $1.5 million, Keswick said.
Public mental health and lead
GHS has provided assessments for autism since 2014 (when the Medicaid benefit began) and in 2017 added diagnostic testing for fetal alcohol syndrome. Well-integrated in the community, and with established assessment services, GHS was the logical choice to provide specialized lead screening. With neuropsychological testing, “we could at least get a baseline and reassess over time,” Tompkins said.
“Initially the idea seemed impossible because it would take so many resources,” she continued. “We provided a guess for what we might need, but estimating resources for such a large population over time is very difficult.”
Fast forward to January 2018: two crucial events emerged in Flint water recovery. First, the Flint Registry’s pre-enrollment opened. Second, Michigan’s American Civil Liberties Union (ACLU), New Jersey Education Law Center, and White & Case LLP filed a class action lawsuit against three state and local school entities [Michigan Department of Education, Genesee Intermediate School District, and Flint Community Schools] on behalf of Flint children exposed to lead.
The goal was to compel the state to provide the resources needed. Expert testimony from a neuropsychologist made the case that children needed specialized comprehensive screening beyond the scope of school testing. Ideally, all Flint children would be screened to pinpoint need. ACLU of Michigan then approached GHS about providing a lead screening resource.
“Child Find Laws” and educational needs
ACLU focused on Michigan’s “Child Find Laws,” or the state’s obligation to identify children’s educational needs, under the Individuals with Disabilities Education Act. Failure to identify children meant non-compliance and violation of children’s rights.
In the spring of 2018 the case was settled for the plaintiffs and the funds became available: $3 million allowed the start-up of the Neurodevelopmental Center of Excellence (NCE), an expansion of GHS assessment services for autism and fetal alcohol syndrome.
In October 2018, NCE began accepting referrals for lead exposure testing, and in January 2019, NCE became fully operational. Located in Hurley Medical Center’s eastside campus building, NCE shares the facility that houses the GHS clinic for autism and fetal alcohol syndrome testing: 2700 Robert T. Longway Blvd. at the corner of Dort Hwy.
To offer screening for potential lead exposure to hundreds, potentially thousands of children, GHS and NCE needed to develop “a clinical model that would maximize the benefit to the impacted community,” Tompkins said. The NCE staff is comprised of two licensed psychologists (LPs), highly qualified, doctoral-level professionals in pediatric neuropsychology (with post-doctoral training and fellowships) together with six master’s degree-licensed psychologists (LLPs) trained in psychometry. The LLPs do testing and scoring; the LPs do interpretation and explanation to parents.
What is specialized neurodevelopmental testing?
Lead does not impact identically across populations. The amount of exposure, the length of time, age and developmental condition are all factors. NCE does not draw a straight line between lead and children’s difficulties; too many other social determinants could be involved. “While there’s no single profile, children are at higher risk, so specialized screening and early identification are crucial,” Tompkins said.
Going beyond the psychoeducational testing in schools, specialized neurodevelopmental screening looks at all aspects of brain functions from the comprehensive cognitive standpoint: memory, attention, impulse control, problem solving, ability to communicate, and information processing.
“With a very large lens we look at the child across the board,” said Dr. Katherine Burrell, associate director for assessment services at NCE. “Where are they in their current functioning? We look at social/emotional, cognitive, academic/learning, language, memory functioning, visual/spatial skills.”
The goal of testing is to obtain best help here and now. For a struggling child, the pivotal point is where they go from here. That is why, for Burrell, “the recommendations are the most important.”
Models, or re-inventing the wheel
Sketching the standard model for lead testing, Burrell described a daunting outpatient process, typical of national sources using lengthy standard assessment batteries. The usual practice relied on a screening packet containing:
- a form to schedule the testing
- directions to return the completed forms
- a description of what to expect — six to seven hours of testing
- information for a return visit for a feedback session
But such a routine was unlikely to work in Flint — a population with literacy issues and without trust. “We know that families cannot do a traditional six- to seven-hour assessment,” Burrell said. NCE modified their assessment down to four hours. Still, at the outset there were no-shows. “We tried to figure it out, and it seemed to be lack of trust.”
Some way to connect with the community was needed.
Enter the Family Navigator
A way to connect with the Flint community came through GHS experience with paraprofessional staff called “family navigators.”
The story of the family navigator starts with the January 2016 Emergency Declaration for Flint that opened the door to federal aid.
A one-year grant from Substance Abuse and Mental Health Services, or SAMHSA , allowed for emergency case management services through Community Outreach and Family Support (COFS), a part of GHS. Six Flint contract employees were hired — people who lived in Flint and experienced the water crisis themselves. Some had been working with other projects and community organizations, so they had “lived experience.” They contacted people, going door to door, to learn about their needs and identify children in order to coordinate support recovery.
Elizabeth Burtch, manager of COFS, described the value of the family navigator as a lesson learned from the success of SAMHSA grant experience. “Many are parents themselves, long-time Flint residents, most often from ‘people professions’: pharmacy tech, cosmetologist, hair stylist — good with people, care about others and can talk to them,” she said, adding that the navigators provide an invaluable connection with the Flint community.
Subsequent grants, especially from local foundations, continue to fund the navigators who today are a paraprofessional team of 10 working from 30 to 35 hours per week. Their caseloads can go up to 60 families, although not all need the same amount of time. Some families need a daily check-in, others less frequently.
In November 2016, the Flint Medicaid Water Waiver allowed the state to provide “targeted case management,” or individual assistance, for those eligible. Because GHS is the designated provider for waiver benefits, each family that comes through the waiver program is assigned a navigator, in addition to a licensed professional, through COFS. Waiver sessions include information about NCE screening for children. Even if parents decide not to pursue NCE assessment, the navigators can help them connect with school resources and the educational process.
With the family navigator such an effective part of COFS, the way to community connection for NCE was clear: incorporate a navigator to help guide parents through the neurodevelopmental assessment.
Today, NCE houses two family navigators, funded by the 2017 Health and Human Services award of a Healthy Start grant to the Genesee County Health Department. They help with the initial screening, often in the home, and can help families find local resources for other needs. The NCE navigators understand the steps of the lead screening process and the complexity it presents to parents.
The “fabulous” family navigators
Since they were introduced in March 2019, family navigators have become “a first point of contact on the ‘front end,’” according to Burrell. “As locals who have lived through the water crisis themselves, they are part of the community and they provide a wraparound service. They go into the home, if the family elects that, do a water assessment, and can be present at screening to establish medical necessity for assessment.”
The NCE family navigators schedule and participate in home visits that take about two hours. They can learn about family needs for community resources. Most often, families need better housing, a problem even before the water crisis. As Burrell noted, “the family navigator enters the home and sees holes in the ceiling where the family lives. This is the reality.”
During the neuropsychological screening at the clinic, which averages about four hours, the family navigator may check in with the parents who are waiting. When the feedback session with the neuropsychologist takes place, the family navigator can be present as the results, diagnoses, and recommendations are shared.
When recommendations based on preliminary data are shared, the navigator can be present as well. The navigator can also participate in meetings with a school Individual Educational Provider (IEP), assist in obtaining mental health help or outpatient speech therapy.
The navigators follow the family through the entire process.
Both Burtch and Burrell called the family navigators “fabulous,” and their on-the-ground experience has helped shape the work of both COFS and NCE.
NCE and the schools: multiple systems at play
Referrals to NCE come primarily from physicians, lawyers, the Flint Registry outreach team (which accounts for one-quarter to one-third of referrals), and the schools.
“The principals are burdened,” Tompkins said. “In the schools we seek out lead or key teachers. We can shore up the school system’s intense behavior support needs — it’s a shared responsibility with mental health.” At the same time, she said, “We are working more closely with schools to develop referral protocols and how to describe the results and recommendations with families.”
When an NCE assessment recommendation suggests that the child have an Individual Education Program or IEP in school, parents must follow the school process: submit a written request on behalf of the child for a Special Education assessment. Then the school must follow through with its own testing.
Since August and September, referrals to NCE have spiked, according to Burrell. Now there is a waitlist for assessments. In addition, “at first we tended to get the obvious cases, but now we are getting more complex cases, which take more time.”
With wait time for an NCE assessment increased, it is important that the school supports be put in place if possible for the child until neurodevelopmental testing is completed. Said Burrell, “The schools seem open to working with us; neuropsychological test is just one way to help the schools adjust services, but it will be an ongoing process with what’s being provided in the interim and after results are provided to meet the children’s needs.”
Because school psychoeducational testing augments neurodevelopmental testing, schools can help by accepting and respecting the results. With regard to assessments, “we fill the void in school systems; we fill the gap,” said Burrell. “Everyone has the same commitment to families,” she emphasized, “but all institutions have their own systems — it’s the challenge of multiple systems at play.”
In the meantime, as reported nationally in the New York Times, the demands on Flint schools are enormous. Tompkins noted that examination of the first NCE 100 tests showed that approximately two-thirds of those tested were receiving some recommendations for intervention. Special education in Flint schools is strained to the breaking point.
The power of feedback
NCE screening is all about function, and its recommendations are about the future of the child. The post-screening session when recommendations are shared with the family are the most crucial part of the process. Burrell described these sessions as “powerful and amazing, very emotionally charged, often marked by a sense of gratitude.”
Validating the parents’ feelings supports them to go forward. More rarely, anger can emerge, but the task of NCE is to validate parents’ feelings, to reframe their situation.
Burrell emphasized, “All these families have been through trauma. They’ve had to restructure their lives to accommodate this event — live with family elsewhere, get water — all the efforts they’ve made to cope. We can show how their persistence has brought them to this point and [provide] a feeling of what they have achieved here.”
NCE can be the first point of rebuilding trust with the community. “When parents get what they need, trust begins to build,” said Burrell. “It’s clear that NCE is not just testing; it’s about the community and the child as a whole. We designed around the families and are still changing, ever evolving to make things easier for families.”
Challenges and optimism
As 2019 closes, challenges for NCE remain — continued recruitment of neuropsychologists to come to Flint, the slowness of Medicaid reimbursement, the need for additional financial supports. Adequate housing still remains the number one challenge for many families who use CFSS. Flint-area pediatricians are still learning about NCE assessments as GHS reaches out with information. Success in all these areas would help position GHS and NCE for the re-testing of children in two or three years.
Still the energy for the coming year at NCE is palpable.
“I did not realize how many committed people wanted to help. The level of commitment has been eye-opening. When you find people like that you know you have a good work force,” Burrell said.
Recently, Newark officials inquired about NCE and the Flint Registry. “Perhaps,” reflected Burrell, “we will lay the way for others, to show a way how a community comes together.”
EVM Staff Writer and columnist Teddy Robertson can be reached at email@example.com.