PA Families Need Nurses Now

04/20/2026

Want some tips from long-time parent advocates and state legislators on how to effectively advocate with your own reps? Tune in to Imagine Different Coalition’s Facebook Live tonight, co-hosted by Vision For Equality at 6:30pm! Info below:

Join us tonight at 6:30 PM EST

FB Event Page - https://www.facebook.com/share/1CxJXo8aPv/

01/29/2025

UPDATE (January 30, 2025): Together we sent over 3,500 messages! Read more about what’s happening now at https://bit.ly/3WE0or4

Protect Independent Living Funding: Stop the Freeze on Federal Programs

Dear Members and Allies,

NCIL is aware of the news overnight that the Trump Administration has issued a “Temporary Pause on Agency Grants, Loans and other Financial Assistance Programs.” We are currently reaching out to our contacts in Congressional offices and in the Trump Administration for guidance and information on what this means for Centers for Independent Living and Statewide Independent Living Councils. As of right now, the Payment Management System (PMS) login appears to be frozen.

How You Can Help

Your voice is powerful, and together we can make an impact. Here’s what you can do:

- Take action at the NCIL Advocacy & Action Center: https://bit.ly/4g8sx0X . Select “Protect the Independent Living Funding: Stop the Freeze on Federal Programs”.

- Share this Action Alert.

- Tell Congress and the Trump Administration to resume funding for the Independent Living Program.

- If you receive any guidance from your state or from the federal level, contact NCIL and share what you are hearing.

NCIL is working on guidance for CILs on how to respond if this freeze remains in place and we are considering options for opportunities for CIL and SILC directors to come together to discuss impact and response. If you have any questions or have any information you can share, please contact NCIL Director of Advocacy and Public Policy Jessica Podesva by email at [email protected] or by phone 202-864-4251.

Image: ADVOCACY & ACTION Center Logo – National Council on Independent Living Advocacy and Action Center graphic features two abstract letters A, reflected horizontally in purple and green.

12/16/2024

A Guided Tour to Transition Planning is happening tonight if you're able to join! Details and registration information is available at: https://familiesccanphilly.org/events

04/10/2024

Webinar: Transforming Care for Children with Complex Medical Needs: Insights from HRSA-funded Demonstration Sites | April 23, 12:00-1:30pm, ET


Children with medical complexity live with health conditions that often require care from different health providers. This system of care can be hard for families to navigate. AcademyHealth and other partners are working to change this system. Join us as we introduce the Enhancing Systems of Care for Children with Medical Complexity initiative and hear more about current work to make sure that care for children with medical complexity is easy to access. We will also hear a parent's and provider's perspectives on why this initiative is essential. Register here. (Please note, a free AcademyHealth account is required to register.)

This 90-minute session will provide an overview of the initiative and its five Demonstration Sites working to improve models of care for CMC.

04/03/2024

Birth-Five Workshop: Managing the Invisible Labor of Being a Caregiver

You are an incredible caregiver who is probably juggling a lot at once. You are constantly in overdrive, planning, making decisions, and organizing to ensure everything runs smoothly and efficiently. All this can take a huge toll on you. Join us as we talk about what is invisible labor, knowing when it is getting to you, and tips to deal with it.

Saturday, April 20th- 9:30 am: bit.ly/4asiAs7

Monday, April 29th- 6:30 pm: bit.ly/43F5Koj

03/30/2024

The PA Vent Camp is back in person this year! If you know a vent-dependent child who would love a sleep away camp experience - check it out!

PA Vent Camp is committed to providing the ultimate summer camp experience to children and adults who rely on mechanical ventilation to breathe. With the help of our dedicated volunteers, our campers...

02/15/2024

Please send us a Private DM with your information.
Thank you

01/17/2024

This story first appeared in The Investigator, a weekly newsletter by Spotlight PA featuring the best investigative and accountability journalism from across Pennsylvania. HARRISBURG — With little fanfare, Gov. Josh Shapiro in December signed into law a bill aimed at fixing long-standing probl...

01/15/2024

Join us this month for a workshop on Overburden by Systems of Care
and How to Reduce that Stress

There will be two workshops based on the age of your individual. Look below to see which best fits your situation.

Caregivers of Individuals aged Birth-5
Tuesday, January 23rd,
6:30pm-7:30pm
https://shorturl.at/dhBG2

Caregivers of Individuals aged 6+
Thursday, January 25th
6:30pm-7:30pm
https://shorturl.at/yHIUV

Our loved ones are often involved with multiple systems of care which can be quite overwhelming. All the paperwork and wait times can be very stressful on caregivers and their families. Join us as we discuss the different systems we might encounter on our caregiving journey, how they might cause us stress, and how we can continue to advocate for ourselves and our loved ones.

01/13/2024

Big news from the Pennsylvania Department of Human Services today!! 👏

The deadline to enroll in free or low-cost health insurance through PA's Affordable Care Act Marketplace, known as Pennie, has been extended to January 19th! ⏰

The original deadline was January 15th, which falls on MLK Jr. Day, a holiday when state offices are closed.

Those who enroll in coverage before this deadline will have insurance beginning February 1st!

Absent special circumstances, you cannot enroll in Pennie health insurance after January 19th if you are seeking coverage for 2024!

Learn more and enroll at www.pennie.com 💻 aid you need help with enrollment, contact the Pennsylvania Health Access Network.

P.S.: 9 in 10 people qualify for some kind of financial discount or savings on Pennie! These discounts can help lower monthly premiums and copays for the insurance.

11/15/2023

11/08/2023

This looks like another wonderful training opportunity from the folks at PHLP! (In-person and virtual attendance options!)!

Next month, we are offering a FREE in-person training called "Medicaid Eligibility Across the Lifespan: Understanding Medicaid Eligibility for Children, Adults, Older Adults, and People with Disabilities".

The training will take place at Wesley Family Services in New Kensington, PA on Tuesday, November 14, 2023. You can choose to attend either the 3-4pm session or the 6-7pm sesssion. See flyer for more details and register at the links below.

Register for 3pm session: https://us06web.zoom.us/meeting/register/tZwkcemqrT4tHdVdrJEhO-JHssj8Xc1RHfEr #/registration

Register for 6pm session: https://us06web.zoom.us/meeting/register/tZEsdOqsqzopGdFxKx0aqwP1UdUFUHKLmOwR #/registration

Please e-mail [email protected] with any questions or accommodation requests. We hope to see you there!