Imagine in two days you will be homeless. That is only the tip of the iceberg. You’re also suffering from diabetes. You’ve run out of food stamps. You are a victim of domestic violence and you’re beginning to suspect your toddler has a developmental delay. Things are pretty bleak but assistance is out there and you’re a fighter. So you begin to investigate where you can get the help you need only to come face-to-face with a slew of multiple agencies at different locations, each with pages and pages of individual forms. Suddenly you realize getting help will be as massive a challenge as the ones you are trying to overcome. Feeling hopeless and overwhelmed you call out for a super hero even though you know they don’t exist. Luckily for families on the edge in Maryland, he sort of does. His name is Ed Feinberg.
Edward Feinberg, Ph.D. is a veteran program administrator, psychologist, writer, and Program Manager of the Anne Arundel County, Maryland Infants and Toddlers Program. Learning Links sat down with Feinberg to discover how he is transforming the way families get the help they need when life is hitting the hardest and addressing issues of toddlers with disabilities.
A passionate and tireless advocate with the curiosity of a scientist, Ed realized a major problem facing families on the edge was the sheer complexity of the system and began to develop the Single Point Entry program. This program allows data to be shared between multiple agencies and greatly reduces the number of forms families are required to fill out. “We studied 32 different programs we have for families and discovered that they require 150 pages of intake forms! Out of those 150 forms there was an 80 percent overlap.” Combine this amount of paperwork with the physical realities of different agencies at different locations, each which require different meetings, and you have a system that is extremely stressful on families.
Ed explains, “in the new concept, all the agencies have a common intake process and a common form. All providers do the same intake and help families prioritize what needs to fill first. For example, if you are about to be evicted from your home you might not be able to prioritize dealing with your child’s developmental delay at that moment. After the intake, an email goes to the person who is charged with the highest priority on your list. Resources are used more wisely.”
We wondered how hard it was to break through the red tape between agencies and get them to agree to the sharing of information. “It is all about creating understanding. We went to the different agency heads first with the concept. After we got conceptual approval from schools, the health department and social service agencies, we were able to show how the new system would help streamline work for the entire staff. It became clear that as long as they get parental consent, sharing data is much easier and the relief for families trying to navigate the system is enormous.” The result helps everyone to prioritize needs and collaborate on solutions.
Ed knows the realities and scheduling constraints many families who need help face and it bugs him when people don’t consider the role time plays. “It always bothers me when you see a film about early intervention and someone is at home. In reality most parents leave for work at seven in the morning and return at six at night.” Time, as they say, is money. To lighten this burden and help address this issue Ed began to champion the use of Telehealth system.
Using a computer, families’ are able to work with experts from anywhere. This is not about diagnostics, but about teaching parents. Parents can work with their children while a speech and language expert watches from a remote location and coaches them through the computer. “Coaching is huge,” Ed says. “We even worked with a parent who is a solider in Afghanistan.”
Talking to Ed, you realize he is constantly thinking of ways to refine the system so it works more efficiently. When he realized that many three year olds with disabilities were having trouble in preschool settings he wondered how he could help. “Kids with special needs are being expelled from child care centers every day. There are places that refuse to serve them.” Ed realized parents needed help prioritizing their children’s needs and finding a program that matched – so he went to work.
“We started a program that allowed for flexibility. We sit down with parents in the program and representatives from the multiple agencies that serve them and try to prioritize their child’s needs. A prioritized action plan is created and the parents leave with that.”
It is amazing what passion and vision can do to transform the lives of those in need. For Ed Feinberg it is all in a day’s work. With all this burden lifting we asked what he does for fun. He replied, “I’d like to say I go water skiing in the Caribbean but mostly I read.”