PATH acknowledges the Black Lives Matter movement and the commitment to end racial and social injustice. We are collaborating with our national organizations to educate individuals on this very important topic that Black families face especially those with special healthcare needs.

Please click the links below to see how we are working with other national organizations.

Family Voices
Parent to Parent USA

 

PATH Parent to Parent/Family Voices of Connecticut is a network of families providing informational and emotional support to others who have a child with developmental or health related needs. PATH/FVCT reaches out to help strengthen families coping with similar situations in Connecticut, and the organizations that serve them to reduce isolation, empower families as advocates for their children and reaffirm their values as parents and caregivers.

Families of Children with Special Healthcare Needs Push through a Pandemic Mountain

by Nanfi Lubogo
As the world abruptly shut down due to COVID-19, the reality of the biggest pandemic of our lifetime began to sink in. In the beginning, many treated the situation as a vacation- a “Coronacation,” they called it. As days seemed to get longer, boredom and endless Zoom conferences became the order of the day. Most people accepted the “new normal.” School districts implemented distance learning and the majority of families were able to adjust and deal with the inconveniences that arose from things we’d long taken for granted pre-COVID 19.
However, in some households in Connecticut and across the nation, isolation, anxiety, and uncertainty very quickly set in. Families of children and youth with special health-care needs had to figure out how to explain to their child that their school, activities, or programs were shut down. They could not see their grandparents and friends. Parents had to figure out how to teach their child as their special educators would, dealing with difficult behaviors, anxiety, and depression that were triggered by these sudden changes in their schedule. Parents were doing this while balancing the demands of work, either remotely or in person for those deemed “essential workers.”

More

Supported Decision-Making-An Alternative to Guardianship

By Sammi Nuss (Co-Chair KASA) with a little help from one of my strongest supporters, my Mom, Ruth Nuss (Board President of PATH/FVCT)
Supported Decision-Making (SDM) agreements are something I am very excited about because they are a less restrictive alternative to Guardianship for people with disabilities who are able to make decisions for themselves, with guidance and help from people that they trust and have chosen as their supporters. Lots of people with disabilities need Guardianship because they are not able to make their own decisions and have limited life skills. There are also a lot of people (young, adult and elderly too) that CAN make decisions with just a little support, some of these currently have Guardianship, maybe because they don’t know there is an option and could be independent with an SDM.
Let me tell you my story:
When I was in my senior year of high school, I was nervous about graduating because I did not know what was going to happen after I left there. Our school had advised my Mom to apply for guardianship because they were worried about me and worried that my Mom would not be able to help me once I was an adult and had left school and I am sure they didn’t know there were other options.

Not Just Along For The Ride: Families Are The Engine That Drives Pediatric Home Health Care

Families of children and youth with special health care needs and disabilities are the engine that drives home- and community-based services for their children. They are not passive observers in the pediatric health care system; they become specialists in medical care, advocacy, and public health, uniquely qualified through their lived experience of providing care across multiple systems to their child—a “certification” only they can hold.

I know because I was the mom, primary caregiver, chief communicator, and care coordinator for one of my daughters, Justice Hope, before she died at the age of 11. Justice was born with congenital anomalies that did not tie up neatly into one overarching diagnosis but that led to multiple disabilities and many complex medical needs requiring technology, home health, and numerous interventions throughout her life.

 

More