The transition of Aliyah from Illinois’s early intervention program into one in Mississippi went smoothly for her daughter, at least initially. Aliyah, who has multiple developmental delays, is eligible for a variety of therapies under the Individuals with Disabilities Education Act. All children below the age of three are eligible for this federal program, which guarantees a wide range of therapies. This meant that Illinois children would have weekly sessions with a special teacher, as well as speech, physical and occupational therapy. That’s a total of 25 therapy hour per month. The service coordinator in Mississippi told Aliyah that Aliyah was not eligible for three of the Chicago-based services. Two — occupational therapy and speech therapy — would only be offered twice per month. Aliyah would get one-third the therapy she had previously received. Foster sobbed and hung up the telephone. Foster replied, “Oh my God, what was I doing to my child?” Foster stated, “I’ve moved Aliyah to a place she can’t receive the help she needs.” Foster added that Foster was persistent in calling Foster for occupational and speech therapy, and that Mississippi had to provide them. Aliyah was three years old in March and had graduated from the program. Mississippi had only provided one-third the services that they promised. “We had hoped that we would have the same services in Mississippi.” Foster admitted that he was not sure. They are not the only ones who feel this way. Mississippi Today reported last month that First Steps, Mississippi’s early intervention program for children, was delayed in providing services to hundreds of kids because of an administrative error. However, conversations with First Steps parents and current and former employees of Department of Health, the department that administers the program paint a picture of a program which delayed and sometimes never delivered federally mandated services to many children well before the administrative hiccup. According to employees, the reason is that the program is severely underfunded and understaffed. Service coordinators who match children with therapists to monitor their progress report casesloads between 90 and 100, which is more than twice the recommended limit. These therapists are becoming harder to find. According to former and current First Steps therapists, reimbursements for appointments can sometimes be delayed. Many therapists have left the program because the Mississippi rates are still lower than those in Medicaid or other neighboring states. Parts of the state aren’t able to afford the services this program promises, and sometimes don’t even have enough therapists. One long-serving service coordinator said that it was a mess, but she asked to remain anonymous in this article. “When I started, there were many agencies that had contracted with us. They stopped working with us because they haven’t been paid. The providers who are available in many locations are few and far between.” While states are not required to take part in an early intervention program they must. However, all states do. Federal rules require that states ensure that children start their recommended therapies within 30 calendar days of qualifying. Oscar Stearns waited for his match with his special instructor for over a year. The 2-year-old was born 15 weeks prematurely. He has severe cerebral palsy as well as vision impairment. Oscar, who was also from Chicago and moved to Mississippi with his family in July, qualified for occupational, physical, feeding, and vision therapy. He also had a special instructor to help him and his family. This was last summer. Oscar’s mother Susan Stearns was informed by a Mississippi district coordinator that First Steps had no special instructor in Oxford because of “unexpected circumstances”. She stated that the agency was looking for someone and would let her be informed when they did. Stearns stated that her family is still waiting. Stearns stated that the law could say anything it likes, but it won’t make it occur. It became a nightmare. Therapists who have left Mississippi’s First Steps program claim multiple reasons. These include reduced reimbursement rates for appointments, billing delays, and a decision to make all state-contracted workers independent contractors. All of these reasons point to the same thing: a lack of funding. Rita Hall, a speech therapist who worked with First Steps from 2012 to 2016, said that it became a nightmare because the billing requirements for independent contractors were too burdensome. “It was nearly impossible to handle everything unless your’re Wonder Woman.” Susan Stearns has been told by doctors that Oscar may eventually be able to stand unassisted or walk with the right therapy. His life expectancy would be dramatically increased if he had both abilities. His mother stated that this knowledge makes the service delays more painful. Stearns stated, “We were repeatedly told that these years are the most crucial for accelerating his life’s potential.” Stearns refers to neuroplasticity. This is the belief that young brains are more able to forge new connections and grow than older brains. This means that shorter and more affordable therapies for early childhood often yield better results than the longer, more costly therapies offered later in life. “If the state invested early intervention, we’d witness in less than five year drastic reductions in the amount of special ed referrals once children enroll in school,” said Cathy Grace, of the University of Mississippi Graduate Center for the Study of Early Learning. Grace studies the effects of educational programs on children. Grace stated that early intervention is not an entitlement. Grace said, “It is an investment.” However, for these parents it’s also a clock. Stearns and her spouse have been discussing moving to Tennessee. Tennessee has ten times the funding for its early intervention than Mississippi. Julie Foster and her husband also discussed the possibility of moving. She gave birth to Aliyah’s younger sibling, Sophia, in June. Foster stated that they would consider moving to Memphis if Sophia requires early intervention. Foster stated, “You do whatever you can to get your child the services they require.” Mississippi’s top officials recognize how important these first years are to a child’s development. “90% of the brain develops in the first five years. School readiness is the ability to prepare children for school and to receive early learning opportunities that will help them succeed. “Families, early childhood providers, and community partners need to work together to ensure all Mississippi’s children enter school prepared to learn,” Gov. Phil Bryant stated this in a statement posted on the Mississippi State Early Childhood Advisory Council website. Bryant’s support for Bryant has not resulted in funding. Tennessee allocated $12.9 million to its early intervention program this year. Mississippi, which has a population approximately half that of Tennessee’s neighbor to the north, spent $1.3 million on its program. The early intervention programs of other states in the area are also more expensive. Alabama’s population is 60% larger than Mississippi’s. However, Alabama will spend $8.1million on early intervention this year, five times as much as Mississippi. Louisiana, with a slightly smaller population, will spend $11.7million, eight times more than Mississippi. These disparities are evident at all levels of the program. Mississippi changed its eligibility criteria five years ago. It now allows for a 33% delay in one development area, and a 25% delay in more than two. Mississippi currently has a lower threshold for eligibility for early intervention than 32 other states. Illinois is one of these states, as it was where Aliyah Foster and Oscar Stearns were first diagnosed. According to the Department of Health, the change was made in order to “better align MSDH’s definition of developmental delay with that used by (Mississippi Department of Education) IDEA part B for children aged 3-9 years of old.” Others however claimed there was another reason. Michael Cruthird, who retired from First Steps in 2015 after serving more than 20 years as the Coast’s district coordinator. “… It’s easier to look good if there is a smaller number of children. Things go more smoothly. It all boils down to money. We would have more resources to serve children. Therapists who work with Mississippi’s First Steps earn considerably less than those in neighboring states. First Steps pays $25 to special instructors for an hour in the patient’s house. Louisiana’s instructors earn $59.80 per hour for the same session. It’s $36 in Alabama. It’s $36 in Alabama. It’s $80 in Tennessee. This is more than twice what the same provider would make in Mississippi, according data from each state’s early interventions program. Joyce Bates, who managed a clinic that provided speech, occupational, and physical therapy services for First Steps, said, “I enjoyed it,” and that the employees she had loved it. However, it wasn’t financially viable. Directly for the Department of Health, service coordinators receive $17.50 an hour, compared to $21.67 in Louisiana. Many also have to manage more families than coordinators in Louisiana. Service coordinators in Alabama and Louisiana have an average caseload that includes 45 families. According to data from Mississippi’s Department of Health, coordinators have an average caseload of 60 families. A district coordinator for one of Mississippi’s nine First Steps programs stated that many service coordinators under her supervision manage around 100 families. This is more than twice the ideal caseload of 45. Mississippi Today spoke to a service coordinator who confirmed that her caseload currently includes 90 families. Cruthird stated that this is not sustainable and added that quality service will suffer. The service coordinators must contact all families and providers of therapy on a monthly basis and meet with them physically once every quarter. Rural areas of the state will have one coordinator who is responsible for children in three to four counties. The service coordinator stated, “I’m keeping it hot.” Their backlog could become the program’s backlog, as service coordinators are responsible to match children with therapists. Mississippi’s First Steps currently provides services to 2,045 children. Another 1,009 children, half of them, are awaiting to be evaluated or matched to therapists. However the Department of Health could not confirm how many of these kids had been waiting longer than the federal deadline. “I have children who are currently awaiting evaluation and will be out of early intervention (if they’re not already) within the next three month. The service coordinator said that they will be entering schools once they are evaluated. We have cases that take over 90 days. This is against federal regulations. Sometimes parents are unable to make it happen on time due to work commitments or simply don’t call back. There are exceptions. But there are problems on our end.” “Would families slip through the cracks, if we were compliant with caseloads?” The service coordinator grinned. “Probably.” Editor’s note: Next week’s installment will focus on First Steps and the possible solutions to the problems facing the program.