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When, in the 1990s, Emily Lengen chose a career working with babies and toddlers with disabilities, it felt like a chance to earn decent money while doing important, challenging work that she loved. Lengen, who lives near Rochester, New York, travels in person to the families鈥� homes 鈥� sometimes logging up to nine visits in a day 鈥� teaching children with developmental delays and disabilities how to play with toys and socialize with siblings and peers; and coaching their parents in how to help the babies grow and thrive.

Yet as her 30th anniversary working as a special education teacher for the approaches, Lengen increasingly feels disillusioned: still happy in her work, but distraught about remaining in what may be the only profession in New York that hasn鈥檛 gotten a substantive raise 鈥� in absolute terms, much less adjusting for inflation 鈥� in three decades. Any modest rate increases the state鈥檚 early intervention providers (which include teachers like Lengen and a range of therapists) have benefited from, were generally counterbalanced by cuts. 鈥淎s a 30-year veteran with a master鈥檚 degree, I am working twice as hard as when I started in early intervention, and making less now,鈥� Lengen said.聽

Over the same time period, New York鈥檚 hourly minimum wage has , from $4.25 in the mid-鈥�90s to more than $15 now. The average salary for public school teachers jumped from in the mid 1990s to about in 2023-24, according to the National Education Association. And, while New York state data is elusive, nationally the for chief executives climbed from nearly $6.4 million in 1995 to more than $20 million in recent years.

The Economic Policy Institute’s Elise Gould, who researches wages and economic inequality, said she knows of no precedent for a job where the absolute pay hasn鈥檛 risen in 30 years. 鈥淚t鈥檚 a little hard to believe,鈥� she said.

Early intervention providers deliver critical services including speech, physical and occupational therapy to children from birth through age 3 who have a range of developmental delays and disabilities. When done well and promptly, that it can reduce the need for costly special education services, as well as other public assistance down the road, and improve life outcomes. 

Early intervention systems are state-led and designed, and the mix of specific funding sources can vary considerably across states. New York relies on a combination of private insurance dollars and county, state and federal funding, including Medicaid, to serve approximately 70,000 children. 

Many of the therapists, special education teachers and others who provide early intervention services are not salaried employees. In New York, they are paid a fee for service rate that is set by the state. After providing the service, they submit a claim for reimbursement and are paid either by Medicaid if the child is eligible, or by the state, which draws from a combination of funding streams. 

For many services, including the specialized therapy and support that Lengen provides, that rate was higher in the 1990s when early intervention began in New York state, than it is today. For instance, a published by The Children鈥檚 Agenda, a Rochester-based group which has advocated for increased pay for providers over the years, found that a standard visit 鈥� at least 30 minutes 鈥� was reimbursed at a statewide average of $79 in 1994, compared to $69 in 2022. Brigit Hurley, chief program officer at the group, said that according to a recent staff analysis, 鈥渞eimbursement rates would need to increase by 240% to have the same spending power as it did when the early intervention program began.鈥�

People in the field say it鈥檚 typical for therapists, who all have at least a master鈥檚 degree, to earn between $50,000 and $70,000 a year 鈥� far less than they could make doing the same work in a different, often less stressful, setting.

鈥淚f you were a governor or a legislator and were stuck at your 1995 salary, would you stick around for that job?鈥� said Amanda Wilbert, the regional director of Step by Step Pediatric Services in Rochester, an agency that coordinates early intervention services. Two of the young occupational therapists Wilbert oversees left earlier this year for jobs doing the same work in a nursing home. The positions came with an approximately $30,000 raise, bringing their pay from about $60,000 to $90,000, and better benefits, Wilbert said.

Partly because of that pay-induced exodus, advocates say that New York in terms of timely delivery of early intervention services to kids. In the spring of 2024, after a long, hard battle by advocacy groups, a pay boost appeared to be on the horizon. a 5% rate increase for in-person early intervention services, plus an additional 4% for those working in rural and underserved parts of the state. But so far, therapists have yet to see that bump, with final approval pending with the federal Centers for Medicare & Medicaid Services. (In late September, federal officials did approve the 4% for those working in underserved areas, but it鈥檚 unclear when it will be implemented, or how many providers it will reach.)

Meanwhile, with the Trump administration having recently slashed Medicaid by trillions of dollars, the long-delayed full increase might not get the federal stamp of approval for the indefinite future, according to advocates, and the system will likely continue to bleed providers. Said Lengen: 鈥淚n the end these kids are losing out, and it鈥檚 a very vulnerable population.鈥�

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New York is hardly an anomaly. Other states 鈥� both red and blue 鈥� report similar challenges, including Texas, Rhode Island and Illinois. In Illinois, a 2024 into the finances and pay in early intervention found that the median annual income for independent contractors in the field was about $71,000, which is significantly lower than typical incomes for similar roles in the state. According to the Bureau of Labor Statistics, the median annual wages for a speech and language pathologist in various settings in Illinois is about $88,000 and for physical therapists, it鈥檚 about $104,000. As in New York, that disparity has caused many early intervention professionals to leave the field, with the number of speech therapists in the program dropping 13% between 2018 and 2023, and physical therapists falling 16%, according to the 2024 report.

The problem is only likely to worsen nationally, said Elisabeth Burak, a senior fellow at Georgetown鈥檚 Center for Children and Families. States will struggle to raise rates for any service that鈥檚 funded partially through Medicaid, she said. 

No one knows exactly what the fallout from the Medicaid cuts will be, but untold numbers of families with children could be booted off the program. At the same time, the amount of money states get for Medicaid-eligible families could shrink, forcing state policymakers to make tough decisions about how to make up the losses. 鈥淪tates are already having a hard time but it has the potential to get a lot worse,鈥� said Burak.

New York鈥檚 early intervention program was created in 1993 and it鈥檚 had a rocky history with compensation. The first significant rate decrease occurred in the late 1990s, according to the state compiled by The Children鈥檚 Agenda. Rates stayed the same for over a decade. And then , there were two cuts, said Brigit Hurley, chief program officer at the group.

A few years ago, in 2022, some providers in New York, including physical and speech therapists, . But that 鈥渄idn鈥檛 bring the pay above when the program started,鈥� said Hurley. And the across-the-board pay bump that the brought hope to many providers, but without final approval at the federal level for the 5% bump, they still haven鈥檛 seen the increase. 

鈥淚鈥檝e had providers tell me they are getting paid less now than when they graduated 30 years ago with a master鈥檚 degree,鈥� said Hurley. 鈥淚t鈥檚 a really dire situation.鈥� 

I鈥檝e had providers tell me they are getting paid less now than when they graduated 30 years ago with a master鈥檚 degree.

Brigit Hurley

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Much 鈥� and on particularly bad days, most 鈥� of early intervention professionals鈥� work is uncompensated: travel time to homes; 鈥渘o shows鈥� when the families aren鈥檛 available; lesson planning and other preparation for the sessions; communication with families between visits; equipment and supplies; mandated annual continuing education sessions; extensive reporting that鈥檚 required on each case.

鈥淭his year and last year 鈥� I come home after seeing four to nine kids and I鈥檓 at the computer for two to three hours doing reports,鈥� Lengen said. 鈥淲ith [26] kids on my caseload, that鈥檚 a lot of reports to do.鈥�

Lengen, 62, graduated in 1985 with a bachelor鈥檚 degree in special education and, a few years later, earned a master鈥檚 in reading. She worked for nearly a decade in K-12 classrooms, and then shifted to early intervention around the time the program debuted in New York in the 1990s. Initially, she worked for an agency and made a full-time salary. But she left the staff position in 2004 when the agency stopped providing early intervention services. 鈥淭he pay was decent, but it was a big learning curve on my part,鈥� she said.聽

Today, Lengen works in homes and child care programs, supporting kids and their caregivers, often coaching the latter on how to manage challenging behaviors. She also winds up filling gaps left by other holes in the intervention system, like supporting children with autism in their sensory development. 鈥淚 end up doing a lot of sensory play since most of the kids don鈥檛 have occupational therapists 鈥� ,鈥� she said. 

Since she began working independently over 20 years ago, the demands of the job 鈥� including higher caseloads and increased reporting requirements 鈥� have increased but the stagnant pay hasn鈥檛 come close to keeping up with inflation and the rising cost of living. There were the two pay cuts across the board 鈥� 10% in 2010 followed by another 5% in 2011 鈥� and, nearly a decade later, special educators were overlooked when some therapists got the modest bump in 2022. 鈥淎t that point, I was really thinking long and hard about leaving early intervention,鈥� Lengen said. 

Despite her financial advisor鈥檚 recommendation that she at least consider working in a school district, Lengen decided to stick around, noting that she loves the work and didn鈥檛 want to start over late in her career. But many other early intervention providers have left the field.

When Sandra Ribeiro started providing physical therapy through early intervention in 2000, she said, 鈥渨e were some of the highest paid across our profession, and we had support.鈥�

At that time, all of the early intervention providers involved in a child鈥檚 case would gather monthly with each family to coordinate services and brainstorm what could be changed or improved. But that practice began to erode more than a decade ago when the state stopped paying professionals for the time spent in those meetings. 

Ribeiro has a doctorate in physical therapy, and is fluent in five languages (Portuguese, French, Italian, Spanish and English). That鈥檚 a huge asset in the many multilingual homes she鈥檚 visited. She points out that providing in-home therapy to an incredibly diverse group of families 鈥� some cooperative and supportive of her efforts and others less so 鈥� is a complicated assignment. 

鈥淚t requires a high skill level to be able to work with a very young child to start with,鈥� she said, 鈥渁nd then you have to be able to incorporate the family.鈥� Still, she found it deeply rewarding to see the progress a child could make when delays and challenges were addressed early in life. One grateful family still sends her a Christmas card every year, even though the 鈥渃hild鈥� she helped is now 24 years old. 鈥淚 don鈥檛 think you can get that in other settings 鈥� you鈥檙e not a fixture of the home,鈥� she said.

Over the years, not only did Ribeiro鈥檚 pay fail to rise significantly, but it also became much more difficult to get reimbursed for her work at all. 鈥淚f you forget to do one little thing on your paperwork it gets kicked back and it can be months before you get paid,鈥� she said. Over the last decade, there have been some in the program, and that has led to stepped up reporting requirements and auditing for all. 

A lot of therapists have been so demoralized they shy away from early intervention even though in our hearts we would love to still be in those homes.

Sandra Ribeiro

On weeks when everything went very smoothly 鈥� and there were no last-minute cancellations or no shows 鈥� Ribeiro would clear $1,500. But many weeks there were hiccups beyond her control that cut into that income. Two and a half years ago, she decided she had had enough and left early intervention for a job teaching physical therapy at LaGuardia Community College in New York City. Most experienced therapists she knows have also left the state-run program over the years, Ribeiro said. 

鈥淲e all know that when you go into health care it鈥檚 not for the money,鈥� she said. 鈥淏ut you have to be able to say to yourself, 鈥楳y work is worth something.鈥� And a lot of therapists have been so demoralized they shy away from early intervention even though in our hearts we would love to still be in those homes.鈥� 

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Since Ribeiro left the field, the payment issues have only gotten worse. Over the last year, scores of New York providers have faced because of glitches with the state鈥檚 new data and payment portal, the .

Meanwhile, across New York state, countless families no longer have access to critical therapies because of the steady attrition from the field. Rural families have been especially hard hit. In the remote Tri-Lakes region of northern New York, Katie Wheeler鈥檚 3-year-old daughter missed months of early intervention services that she was entitled to because of a shortage of providers. 

Diagnosed with autism around the age of 2, the child qualified for in-home special education services and speech therapy. In early 2024, she was assigned a special ed teacher who came to her home two or three times a week, but a few months later, when the state dissolved the agency providing those special education services, the toddler lost access to that support for about a year. She received speech therapy virtually last winter; in-person early intervention sessions weren鈥檛 an option due to the lack of providers in the region. The virtual sessions went surprisingly smoothly for the toddler. 鈥淚t worked so well, I was surprised,鈥� said Wheeler. 鈥淭hey really pour their heart into what they are doing, and she grew immensely.鈥�

At the start of 2025, however, New York鈥檚 virtual early intervention providers learned that they would be getting a sizable pay cut. Ironically, the rate cut for telehealth services, as they are officially known, was initiated to free up funds for the pending 5% increases for in-person services in the state, which is still awaiting approval from the federal Medicaid office.

Wheeler鈥檚 daughter鈥檚 speech therapist, along with most other virtual providers in her county, promptly quit, which Wheeler says she entirely understands. 鈥淲e were not given anyone else because there was no one else to be given,鈥� she said. The family did pay out of pocket for some speech therapy, but in the six months that her daughter went without early intervention services over the winter and spring, Wheeler said she could see significant regression. When she was in speech therapy, the child could name an animal when shown a picture, and make its sound, for instance; but without services, much of that language slipped away. 

When the girl became old enough to receive special education services through school, there was another months-long delay to get services set up. In an effort to access more robust special education services, the family recently moved to nearby St. Lawrence County. Wheeler knows that most families would not be able to take such an extreme and expensive step.

With the recent loss of virtual providers, she said, 鈥渢here are going to be so many kids without anything.鈥�

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Research has shown that timely receipt of early intervention, in the years when the brain is developing far more rapidly than at any other point, is critical to child development, and can improve life outcomes far down the road. Many children who receive early intervention do not in kindergarten, including slightly less than half of those with developmental delays, according to one 2007 study.

When delays and challenges aren鈥檛 addressed in the early years, they show up 鈥� often aggravated 鈥� in schools, where there鈥檚 rarely the time and resources to address them. 鈥淜ids are going to preschool and kindergarten with lower skills than ever,鈥� said Amanda Wilbert. 鈥淭hey鈥檝e never gotten services, and they desperately need them.鈥�

There are many reasons, advocates say, that it鈥檚 been such a long struggle to increase pay for early intervention providers in New York. The isolated instances of fraud have been cited by some state officials as a reason for not investing more, said Hurley.

But the unprecedented rate freeze 鈥� which long predates the fraud 鈥� also speaks to the societal and political invisibility of babies with developmental delays and disabilities, according to early childhood advocates. And it speaks to the invisibility of an overwhelmingly female labor force whose work occurs largely in the private space of the home. 

For now, with the slashes to Medicaid, the push to increase rates in New York is on the back burner, although it is not totally off the table. Hurley and others say they remain committed to advocating for changes that will improve the system, including studying alternative models for delivering services.

Lengen said that many months ago, she stopped looking for the 5% rate increase promised a year and a half ago to finally provide a small boost to her income. 鈥淎t some point, you stop believing that it鈥檚 going to come,鈥� she said.

But unlike so many others, she has no plans to go anywhere. 鈥淚 hate the fact that the state and county don鈥檛 think we are worth giving money to,鈥� she said. 鈥淏ut I love the job and the families,鈥� she added, noting the joy that comes from teaching and playing with the littlest learners on their level.

鈥淚 will work in early intervention until the day I can not get up off that floor.鈥�

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