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.
Building a Great Life Conference
Don’t miss this opportunity to attend the next Building a Great Life Conference. The conference will feature key note speakers Ann and Rud Turnbull who have helped hundreds of families use IDEA (Individuals with Disabilities Education Act) as a tool to building a great life for their children with disabilities. The second speaker, Russell Lehmann, a motivational speaker, author and poet who just happens to have autism. Workshops include topics such as employment, supported decision making, assistive technology, navigating mental health system, benefits counseling, and housing.
Registration fee is only $10.00 ($7.50 plus handling) and includes lunch, dinner and a conference T-shirt.
Where Do You Register? Registration is at Eventbrite. Click the link below and it will take you right to the registration area:
If you have questions concerning the registration, please call Disability Rights Connecticut at (800) 842-7303 or email us at firstname.lastname@example.org.
The Caregiver’s Guide to Helping Homesick Children Cope
When you’re the caregiver for a young child, you are their whole world. You are one of the people they trust the most, a safety net that they can rely on when the rest of the world seems a little strange or different. This is precisely how a homesick child will likely feel.
As a caregiver, you may encounter a homesick child in a variety of settings, such as:
- At a preschool or daycare
- In a new home after a move
- In a hospital during a long-term illness
In any one of these situations, the first place you start is compassion — but, as a caregiver, this is something you already know. How to address this specific child’s homesickness with compassion, while also helping them move through these emotions, may take a little time. The first step is understanding exactly what homesickness is and where it’s coming from.
PATH’s Fourth Annual Online Auction
PATH is gearing up for our fourth annual online auction, which will take place at the end of November, just in time to do your holiday shopping! We are actively seeking donations for the auction including gift baskets, gift certificates, products, or services.
Don’t have a business and still want to help? We’d gladly accept a gift basket donation of any kind for the auction. Popular baskets from last year include a pasta basket, a doggy basket, and a basket of homemade jams/jellies.
This auction is PATH’s main yearly fundraiser and we need your support. The money raised by this auction goes directly to the many programs of parent support, advocacy, and training offered by PATH to families of children with special needs. With major budget cuts in Connecticut, we need your help now more than ever.
If you have a something you’d like to donate to the auction, please contact Auction Coordinator Marni McNiff for details at email@example.com.
Why Oral Health is Important for Children with Special Needs & How to Access It
Parents of children with special needs may have so many doctors’ appointments that it can be easy to forget about preventive and wellness care. It can be especially difficult to focus on dental care. However, oral health is as important as physical health and, if untreated, oral health problems can result in serious complications.
Transitions—Growing Up and Away
Besides starting out a new school year, for many families this fall will be a time to get ready to launch a son or daughter into the next phase of life after high school. Think with your teen what they want to accomplish. The excitement and uncertainty your child may be feeling about these next steps may be mirrored in your own feelings of pride, concern, and maybe even relief. Growth and change affect everyone!
Listen to your son’s or daughter’s hopes and ambitions.
You Are Not Alone: For Parents When They Learn That Their Child Has a Disability
If you have recently learned that your child has a developmental delay or a disability (which may or may not be completely defined), this message may be for you. It is written from the personal perspective of a parent who has shared this experience and all that goes with it.
When parents learn about any difficulty or problem in their child’s development, this information comes as a tremendous blow. The day my child was diagnosed as having a disability, I was devastated—and so confused that I recall little else about those first days other than the heartbreak. Another parent described this event as a “black sack” being pulled down over her head, blocking her ability to hear, see, and think in normal ways. Another parent described the trauma as “having a knife stuck” in her heart. Perhaps these descriptions seem a bit dramatic, yet it has been my experience that they may not sufficiently describe the many emotions that flood parents’ minds and hearts when they receive any bad news about their child.
Barriers for Individuals with Disabilities in Getting Access to Healthcare
Even after children and adults with special needs have enrolled in a healthcare plan through a State or the Federal Marketplace, some are having difficulties accessing care. In this blog, we summarize some of the obstacles and how they can be addressed.
Join CT KASA!
Join CT KASA!
KASA (Kids As Self Advocates) is a national, grassroots project created by young people with disabilities for young people with disabilities. CT KASA is open to anyone with a disability ages 13 to 26.
What CT KASA Can Do for YOU?
CT KASA participants learn how to advocate for themselves and take control over their own lives. CT KASA helps this happen by teaching young people about their rights and how to change the systems that affect their lives.
KASA Kickoff Meeting!
Join us for the KASA (Kids As Self-Advocates) kickoff meeting. The meeting is open to young adults ages 13-26 and their parents. A light lunch will be served.
The KASA (Kids As Self-Advocates) program models leadership and the power of self-advocacy. KASA active in our schools, communities, families and places of employment, and PATH is very exciting to be bringing KASA back to Connecticut. We share our message with other youth who have disabilities or chronic health conditions, as well as with our friends and peers.
Our activities will include:
- Representing the voice of youth living with disabilities and chronic health conditions by speaking to policy makers at public events and hearings
- Educating our communities, including students, teachers and administrators at our schools; medical students and physicians; and federally funded cafe and agencies and state programs
- Serving as advisors to the over 40,000 members of Family Voices across the country and organizations and agencies interested in promoting youth involvement and leadership
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