We will offer parents counseling, training and advocacy to assist families of medically fragile children deal with issues and problems that may overwhelm them. Our staff will offer a balance of both a professional and a parental friendly perspective, which has been the backbone and success of our agency. We have learned that many parents of children with special health care needs cannot address problems at hand because they are to busy dealing with the day to day care of their child. Many of these pressing issues can crush a family or cause great stress if they are not addressed or resolved.
We will specialize in these issues and the pit falls that challenge both the parents and the professionals that may be trying to help the family. We realize that most families are unaware of the direction to take in the maze of options and services that they will need to resolve their unique problems. These exceptional situations are common to us. We would offer a professional and parent friendly staff that will help them. These issues include: school nursing, Medicaid, residential care issues, guilt and the many transitional hurdles a family must endure. As an example, we have seen two issues that have gotten worse for this new population of medically fragile children.
- As these children get older, our community faces a dilemma, along with these parents, because most of the professionals dealing with these children thought these individuals would have a shorter life expectancy. A challenge now exits when aging out of childrenâ€™s programs such as the Care at Home Program. This creates great difficulty for the best-case managers and service coordinators. This stress can lead parents to elect out of home placement based on the difficulty of the transition. Most professionals working with these children aging out of programs have difficultly transitioning them into adult programs. Our expertise will help to make this transition a smoother more confident process. It will be our goal to maintain the family unit with the child at home.
- The other challenge that is extremely difficult for families to work through is the process and decision to place their child in a residential facility. It will be our effort to offer support to a family as they go through this difficult phase in their life. Our agencyâ€™s expertise in dealing with issues surrounding placement of medically fragile children will be a great assistance. This service will fill a void in the service delivery system that does not currently exist. We will help families working through the overwhelming guilt and worry they experience as they consider placement.
- This program will assist families of Medically Fragile, Technology Dependent, Chronically Ill and Developmentally Disabled persons
- Family must reside in Nassau or Suffolk County
- Will help families of children from birth through 21 years of age
How to Apply
Call the intake coordinator at (631) 761-0128