Joanne Sweeney, Director of Riverside Community Care’s Needham-based Early Childhood Services for 20 years, is admired as a passionate advocate for the babies and toddlers served in our programs. And now she’s recognized as a powerful voice who captured the attention of those in high-level state government. This is the story of her relentless pursuit of funding for the programs that serve our most vulnerable members – premature babies, children under three years old with developmental delays, diagnoses such as autism or cerebral palsy, or other complex medical conditions. In late April, in her role as president of the Massachusetts Early Intervention Consortium, Joanne issued a Mayday call across the Commonwealth, for all EI staff and supporters to appeal to Beacon Hill to fund alternative approaches for services critical to the successful development of at-risk youngsters. Some waited on the phone up to 30 minutes to make sure their message got across.
As the COVID-19 crisis squeezed funding and severely disrupted services in the 59 Early Intervention programs in the state, families of the 54,000 Massachusetts children with developmental delays saw crucial services and supports disappear overnight. And without consistent visits with the 3,000 clinicians, therapists, specialists and social workers across the state who work in EI, these children were missing out on critical services needed to build strengths to overcome their delays.
The stark truth is that, although economies can recover as time passes, children’s development in the crucial years from birth to age three cannot. They have only a short time in early childhood to gain strengths and build skills for life’s journey ahead. And Early Intervention is an incredibly cost-effective program, with the Commonwealth saving $27 million annually in special education costs attributed to EI. As well, EI staff are an integral part of families’ lives, connecting them to social supports and services, as many became overwhelmed by new food, housing, and financial stress in addition to their children’s complex needs.
In good times, it’s not hard to see why EI had always been a largely home-based program – examples like feeding, mobility, and speech therapy for very young children are all very in-person activities. But COVID meant in-person interaction was paused – for a little or a long time, no one knew. And financial support for EI was always based on in-person visits.
So Joanne’s urgent mission was to advocate, educate, and negotiate with the legislature and public health leadership to recognize the crisis in suspended services created by the funding shortfall. And programs needed alternative funding so they could continue serving in previously unimagined ways – which they were racing to develop and put in place before their young clients lost too much ground. And in many ways, it was already working.
Because the best outcomes occur when strategies are embedded in daily routines, Riverside teams came up with online strategies to support families to help children practice skills in their daily life. And they actually discovered a silver lining: Remote coaching activities and online caregiver support sessions often revealed opportunities for closer parent partnerships. Adults had to become more active in screen sessions – demonstrating what worked or didn’t with their child – rather than observing therapists interacting with the child. And clinicians were able to see more clearly a caregiver’s other family responsibilities and priorities.
The evidence in support of these new initiatives was compelling. And finally, the battle that had looked fairly bleak from the beginning was successful. Initial funding provided the lifeline to sustain EI programs, Riverside among them, following the significant losses they had incurred during COVID-19 and preventing further furloughs and layoffs. The additional money takes several forms: a temporary April-July rate increase for MassHealth services during the COVID-19 emergency, an early increase effective June 1 for state-funded reimbursements that was slated for July 1, and new flexibility in the delivery of services that Joanne and all EI providers have been working feverishly to implement. Plus $12.3 million was included within the Governor’s approved supplemental budget to continue funding the staff, equipment, and connectivity costs related to the process of retooling programs in flexible new ways to continue serving during a time of great need.
Another accomplishment is the “Turning 3” initiative. Early Intervention ends the day before a child’s third birthday, and local public school systems assume responsibility for providing services for eligible children after that (roughly 40% of children in EI require ongoing services). But with school systems experiencing their own major disruptions, EI providers can still see their young charges who have recently turned three until later in the fall when schools will hopefully open and be able to provide the required services.
Notes Joanne, “We worked day and night to not only secure a fiscal lifeline but to build a new EI support system from the ground up. The Consortium is grateful to Executive Office of Health and Human Services Secretary Marylou Sudders who is Director of the COVID-19 Response Command Center, Acting Secretary of the EOHHS Daniel Tsai, and so many in the Department of Public Health and our state legislature for the funding that allows us to be up and running again across Massachusetts. I’m proud of all my colleagues and our parent partners for working together to deliver services in ways we never had before. And I’m most thankful that we didn’t let our kids and families down!”