Angela Ortiz: A BAYADA Home Health Care Parent’s Journey into Advocacy

Home care advocate Angela Ortiz delivers the keynote address at a legislative reception held in the Massachusetts State House.

Angela Ortiz is a fierce advocate for her medically complex daughter, Ayla, and for other medically complex children and adults across Massachusetts.

Earlier this month, Angela delivered her keynote address at the 40th Annual Legislative Reception held by the Massachusetts Developmental Disabilities Council and The Arc of Massachusetts.

Angela’s inspiring speech, delivered in front of over 200 people, including several state legislators and Massachusetts Governor Charlie Baker, was met with uproarious applause and overwhelmingly positive feedback.

Angela stated, “One mother shared with me that she used to have that fight and fire within her when her daughter was younger, but that her flames had since burned out. She shared that my speech really spoke to her and reminded her of how important it is to find it again. I hope that sharing my story and my journey will inspire others to take action… No matter how slow-seeming your journey may be, it’s important we remember why we advocate: To give a voice to those without one.”

Angela is the founder of the Massachusetts Pediatric Home Nursing Care Campaign that was launched in April 2016 to address the longstanding crisis families have been in struggling to find and retain Continued Skilled Nursing to properly care for their loved ones with complex medical needs at home.

Below is the full transcript of her keynote address.


*Arc/MDDC 40th Annual Legislative Reception Keynote*
Angela Ortiz
March 7, 2018

Next month will mark two years since I entered the State House with a group of parents from the Mass Families Organizing for Change Leadership Series. I was a mother desperate to improve the quality of life for my daughter, Ayla, who was just two at the time, and very sick.

I was drowning in my own worries and fears that came with her complex medical needs, but more so in the inability to access vital home care services she was approved to receive yet didn’t come.

Imagine being thrown into the deepest of seas and when you call out for help there aren’t enough life vests to go around or enough lifeboats to bring you and your family to safety.

I felt so powerless…until…I entered this building. It’s the day I became an advocate!

I was equipped with a vision for my daughter and new tools and the confidence to be a part of some kind of change to address a burning need that affects her life and so many other medically fragile children and adults in the Commonwealth.

That day ignited a flame so deep within me…and I’ve been “FIRED UP” ever since.

I’ll never forget a moment I shared with Ayla shortly after her heart surgery. I put my index finger in the palm of her tiny hand, we locked eyes seeing past all the tubing and drains, and she wrapped her fingers around it and squeezed with such intensity. Wow! At just 3 days old…my fragile and recovering newborn showed her FIRE and fighting spirit…that energy moved me. It strengthened me. It gave me hope that things would work out and be okay.

You see, we all have it in us…this FIRE!

And today, I want to remind you of that and call attention to it in hopes that each of you will set out to find what it is that sparks or rekindles the flame within you. Because when it happens, it’s an unstoppable force, you feel you can move through anything, no hurdle is too high no matter what your life circumstances are in that moment. You find a way! It’s so deeply rooted in love, you can’t help but burst into action and be a part of something bigger than yourself and your own lived experience.

There is no greater time to awaken your inner fire and unleash that advocate in you than when your life or the life of a loved one depends on it. And that time is now! 

I’m counting on all your flames, and more importantly, the disability community is counting on them because it’s in our collective energy, strength, and spirit where I believe the resolve lies as we blaze through every obstacle that aims to unravel and weaken the civil rights of people with disabilities that so many before us have fought so long and hard for.

Yes, we face an uncertain future, but the one thing we have control over is our own certainty of being there, in some way, to do something; to take a stand; to have a voice; to be ready to take action to defend the current laws and protections in place while we also continue to advocate and lay the groundwork for new laws and protections that keep us moving forward.

Each one of you has a place and purpose on this advocacy journey! Whether you are just stepping on it for the first time or you’ve been paving the way for years, as Ayla’s favorite song demands…“This little light of mine, I’m gonna let it shine”. DO JUST THAT…let your light shine, let it shine, let it shine.

You will be a moving force…we will be a moving force… and the future will be bright.

Thank You


For information about how you can begin your journey into home care advocacy, contact advocacy@bayada.com.

Additionally, follow our Facebook and Twitter to keep up with regular updates about how you can get involved.

Advocacy Efforts in Massachusetts Gaining Publicity

Submitted by Rick Hynick, Director, Client and Family Advocacy (GAO)

As advocacy efforts continue to progress toward a State Medicaid rate increase for nursing services, to help individuals with complex medical needs, excitement around the movement throughout Boston and much of the state is starting to build.  On July 30, the Boston Globe featured a lead article about one of the families most effected by the matter.  The article showed how this family has not had nursing coverage in more than 100 consecutive days because of the low Medicaid reimbursement rates.  Two days later, WGBH-TV of Boston ran an on-air piece featuring the Mom from the Globe article and another Mom who is a leading advocate showing the urgency that the 900 plus Massachusetts families needing home care nursing services are facing on a daily basis.

Lend Your Voice to Help MA Families: Moving Globe Article Highlights State’s Shortfalls

Submitted by Conner Sheets, Intern, Government Affairs (GAO)

The Boston Globe recently published a touching and impactful article detailing the plight of Noelia Ferreira and her fifteen-year-old daughter, Abi. The article detailed Noelia’s painful balancing act between being Abi’s mother and her nurse, and the anxiety she feels knowing that someone better trained should be taking care of Abi’s medical needs. While Abi qualifies for the care that would give Noelia a much needed sense of relief and reassurance, MA does not currently offer funding that attracts the qualified nurses necessary to provide the kind of care Abi needs. Noelia is not looking for any special consideration; she only wants the care that the state has already approved, care she has gone without for more than 150 days. (See the full Globe article here).

The lack of available medical professionals in MA is being felt by more than just the Ferreira’s. The abysmal reimbursement rates in the state leave providers with no means of meeting the care needs of the 900 people who need care in MA. Without an increase in the rates, families like Noelia’s will continue to go without the care they so desperately need. You can all help in the effort to get that increase. Go to mychildcantwait.com and tell Governor Baker to fund the critical CSN program!

MassHealth Announces Second Rate Increase In The Face Of Budget Deficit

Submitted by Laura Ness, Director, Government Affairs (GAO)

Last week, Chief Government Affairs Officer Dave Totaro, Boston Pediatrics Director Emery Hughes, and other industry leaders and families gathered together to meet with MassHealth.  MassHealth had asked for the meeting, in regards to the Continuous Skilled Nursing (CSN) program.  During the meeting, MassHealth stated that they recognized that low reimbursement rates were a major problem within the program.  They have planned to increase the rates by 2.25% effective July 1, 2017.  This is the second reimbursement increase we have been notified about within three months.  The organizations working to increase this rate were pleased with this movement but recognized that this is a fraction of what is needed to stabilize the rates.  We look forward to continuing our efforts to increase the CSN rates by a total of $15 per hour.

BAYADA Sponsors Second Lobby Day in Massachusetts

Submitted by Laura Ness, Director, Government Affairs (GAO)

The Government Affairs Office (GAO) organized a second lobby day for continuous skilled nursing providers and parents to discuss our Patient Bill of Rights.  With over 27 meetings scheduled, we focused on meeting with our legislators that sit on important committees and introduced our need to file a budget amendment to support the increased reimbursement rate needed to compete for a median of nurses.  The day was successful, as we lined up House and Senate budget amendment sponsors and additional co-sponsors for the bill.  As stated by the lobbyists from the Home Care Alliance of Massachusetts, we “have set a solid foundation to build upon.” Next, we wait to see where the House will assign the bill and wait for a budget hearing.

BAYADA Sponsors Second Lobby Day in Massachusetts

Submitted by Laura Ness, Director, Government Affairs (GAO)

The Government Affairs Office (GAO) organized a second lobby day for continuous skilled nursing providers and parents to discuss our Patient Bill of Rights.  With over 27 meetings scheduled, we focused on meeting with our legislators that sit on important committees and introduced our need to file a budget amendment to support the increased reimbursement rate needed to compete for a median of nurses.  The day was successful, as we lined up House and Senate budget amendment sponsors and additional co-sponsors for the bill.  As stated by the lobbyists from the Home Care Alliance of Massachusetts, we “have set a solid foundation to build upon.” Next, we wait to see where the House will assign the bill and wait for a budget hearing.

Buzz Builds About Continuous Skilled Nursing Program in MA

Submitted by Laura Ness, Director, Government Affairs (GAO)

On January 10, BAYADA hosted a lobby day in Boston with members of the Continuous Skilled Nursing (CSN) provider coalition, the Home Care Alliance of Massachusetts, and the Pediatric Home Nursing Care Campaign (a coalition of parents and grandparents).  During the lobby day, we introduced a Patient Bill of Rights that will allow for adequate reimbursement rates and other protections for those receiving services under the CSN program.  Since then, BAYADA testified along with other providers and parents about the need to increase the rate.  We have also obtained over 50 sponsors to our bill, and sent over 400 emails to legislators about the bill.  Most recently, one of the parents was featured on the CBS local affiliate WBZ Boston.  The video could not have made our point more clear.  See the full video here. The campaign was also featured in the Boston Globe the day after our lobby day. Click here to read more.

Landmark Legislation Introduced in Massachusetts

Submitted by Laura Ness, Director, Government Affairs (GAO)

Last week, BAYADA’s Government Affairs Office (GAO) along with the Boston Pediatrics office, helped host a lobby day for providers, support organizations, and family coalition members.  The purpose of the legislation was to introduce a patient bill of rights for the medically complex population receiving continuous skilled nursing services and to obtain co-sponsors.  The event was well attended by over 100 individuals and many legislators and staff.  During the lobby day, we had meetings with over 50 legislators and visited every office in the legislature to drop off our packet about the bill. We were also fortunate to have the Boston Globe cover our Lobby Day!  To date, we have over a dozen legislators that have signed onto the bill. Parents and supporters who were unable to be at the lobby day in person sent over 400 emails to legislators.  Click here for the full text and to see what your colleagues have said about the article:

Join the conversation: #mychildcantwait

Photo: Those in attendance at the lobby day.