Issue #62 - February 2021
F2F News
Special Enrollment Period (SEP) for Marketplace Health Insurance
The Maternal Health Child Bureau is excited to share an important opportunity to increase access to quality, affordable health coverage for maternal and child health (MCH) populations in response to the COVID-19 Public Health Emergency. A new Special Enrollment Period (SEP) for Marketplace health insurance coverage will be open to the public beginning February 15, 2021, through May 15, 2021.
 
The SEP allows individuals and families in states with Marketplaces served by the HealthCare.gov platform to enroll in 2021 health insurance coverage. Eligible families can submit a new application or update an existing application. HealthCare.gov provides step-by- step guidance on how families can determine their eligibility, apply and then enroll in a Health Insurance Marketplace plan.

Genetics Corner
PATH's Genetic Video Series
We are excited to get back to our PATH Genetic Video Series. This month our video covers William syndrome and features CT KASA Member Kaitlynn Ramos.

You can view the episode below:
Genetics Condition of the Month
MCAD

MCAD is one of several Fatty Acid Oxidation Disorders (FAOD) in which there is an inability to break down certain fats. This is caused by an enzyme deficiency. This results in a decreased ability to go without food or calories for a long time (fasting).

About one in every 5-17,000 babies is born with MCAD. MCAD is most prevalent in Caucasians, especially those of Northern European descent, although it can occur in any racial or ethnic group.
MCAD can be detected through newborn screening. With treatment from infancy, children with MCAD are expected to live a full life. However, they are still at risk for complications in times of illness.

Prior to newborn screening, a previously healthy child with MCAD deficiency would present with hypoglycemia (low blood sugar), vomiting, and lethargy triggered by a common illness. If untreated, seizures could occur and such episodes could quickly progress to coma and death. Enlarged liver and acute liver disease may also be present. With newborn screening MCAD is usually diagnosed at birth in the United States. Children with MCAD do not have any distinct physical features. Although MCAD can not be seen, it is a serious condition. Good communication between parents, doctors, and school personnel is very important.
Note: There is wide variability within individuals who have this condition.
Racial and Social Injustice

The presentation below is from Town Hall #5 from our Family Voices United to End Racism Against CYSHCN & Their Families. It covers the effects of racism on the mental health of black children.
Parent Support Training
Parent Support for children and youth with special health care needs
Join us on March 11th from 6pm to 9pm for our Parent Support Training!

Are you a parent of a child with a disability who would like to offer support to other parents? Join us for our Parent Support Training where you will learn to provide informational and emotional support to parents with children that have been newly diagnosed with special needs.

An introduction to Charting the Life Course, a person-centered planning process, will also be presented.

Upon completing this training, you will be matched with a parent of a child with a similar disability where you can be a source of strength for families raising a child with special needs.

Advance registration is required. You can pre-register by contacting Sheri Romblad.

Text: 203-215-9257
Call: 203-234-9554
CT KASA Corner by Emily Ball
On January 30th, CT KASA and YASA met to discuss and develop a game plan for the telehealth social stories. Everyone came up with wonderful ideas and in my opinion, it will be an excellent tool for disabled youth to understand the coronavirus pandemic and the importance of telehealth. We also brainstormed ideas for a video about what we all did to improve our mental health during the quarantine.

Current and former KASA members gave our testimonies on February 9th about how police and first responders can better interact with and accommodate us as disabled youth. 

At our February KASA meeting, we invited Libby Riggs, a Girl Scout working on her Gold Star Project. Her project is creating a booklet with art submissions from disabled youths’ views. We also spoke about the CT DD Council’s goal for us to host webinars with topics important to youth/young adults where youth would facilitate. Such content could include life after high school, small business ownership/job skills/keeping a job, and other content like navigating college. We suggested the idea o the National YASA Board at our monthly board meeting and there is interest in partnering. Overall, CT KASA has started the year off productively and I am looking forward to assisting them all.

If you have a youth 13-26 Who is interested in joining feel free to send an email to [email protected]
The Important Role of Parents in Special Education
By Ann Logsdon, VeryWell Family

Parent participation in the special education decision-making process is vitally important. The most important thing parents can do is ensure they are involved with and take an active role as a member of the Individual Education Program (IEP) team that determines a student's path. The IEP team is charged with making educational decisions for students, and addresses issues such as eligibility, evaluation, program development, and placement of a child in special education or gifted programs.

The Importance of the IEP Team

Despite their importance in education decision-making, parents sometimes feel overwhelmed by the IEP team process. They may believe team members perceive them as less knowledgeable about teaching or as obstacles to the decision-making process, especially if they disagree with the educators. Parents and other guardians should not let school personnel intimidate them in this process, because their role as student advocate is paramount.


 
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PATH Annual Golf Tournament
PATH will be holding its first annual Golf Tournament this year. Stay tuned for more information. Details coming soon!
Amazon Smile
Did you know that you can select PATH as your charity of choice, and Amazon will donate a portion of the proceeds to PATH?

Amazon Smile is a great way to support PATH while you're doing your regular shopping through Amazon. You can sign up using the link below.
2020 Annual Sponsors
P.O. Box 117
Northford, CT 06472
Phone: 1-800-399-PATH (CT only)
Phone: 1-203-234-9554