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Hi everyone, I’ve really enjoyed reading through everyone’s introductions—it’s inspiring to see the different paths that brought people into this work.

My name is ShaTonga, and I come from a mental health and social services background with over 25 years of experience. I’ve worked with youth, families, adults, and the elderly, mainly in case management, care coordination, and intensive family-based work. A lot of my experience has been supporting individuals with complex needs, helping them stay stable in the community, and working with families to navigate systems that can feel overwhelming.

My interest in patient advocacy also comes from personal experience. Supporting my mother through her healthcare journey really showed me how challenging it can be to navigate care, even with a background in this field. That experience pushed me to move more into advocacy and focus on helping individuals and families better understand and manage their care.

I’m currently working toward my certification in patient advocacy and building my own practice. I’m looking forward to connecting with others here and continuing to grow in this work.

Hi everyone, I’m Ginger. I’m a Registered Nurse with a Master’s in Nursing and over 40 years of experience in healthcare, and I’ve been working in rural healthcare since 2012. Over the years, I’ve seen firsthand the challenges these communities face—limited access to services, long travel distances, and navigating care across multiple systems. Much of my work has involved helping patients manage complex conditions while coordinating care and overcoming these barriers. Advocacy has naturally been a big part of my work, and in 2026 I decided to focus on it fully by starting my own patient advocacy practice. I’m especially interested in supporting rural and Medicare populations and look forward to connecting with others here.

Hi everyone! While a bit delayed, I wanted to take a moment to introduce myself—and to say welcome and thank you to everyone who has joined PA360° to be part of this community and these conversations.

My name is Melina Oien. I am a BCPA and hold a master’s degree in Health Advocacy from Assumption University. I’m a staff member at GNA, one of your admins here, and an independent patient advocate. Like many at GNA, my role spans a wide range of work—from program development and design, to building and managing outreach and partnership relationships, to supporting our Patient Advocacy Liaisons with more complex or extraordinary cases within the Advocacy Support Center.

In my direct 1:1 work, I focus on medical guidance, with a tendency towards pediatric and young adult patients with complex care needs, particularly rare disease navigation and management (from an advocacy perspective, not as a provider). The individuals I support often have needs beyond direct medical care that still significantly impact their health, so my work frequently overlaps with disability advocacy—connecting people to DSHS and other community resources, and helping navigate, expedite, and appeal within those systems too.

It’s a wild ride sometimes, but I truly love what I do. I'm always happy to connect, and am looking forward to seeing the community grow!

Hello,
First allow me to preface that I am not giving legal advice — that is for attorneys only. But I have a healthy background in the legal system and my belief is that you can be deposed...period. You do not have doctor/patient protection, clergy/congregant protection or attorney/client protection.

Here's what I would do, if it were me and I truly believed the client and I are a good fit: Find a good attorney to represent you (not your prospective client) and ask them to advise you if a «Non-Disclosure Agreement» (NDA) could be executed between you and the prospective client such that you would have the ability to refuse to answer any questions posed in a deposition based on the NDA. You would still have to appear if you get a subpoena (and they «should» provide a stipend for your trouble if you have to travel over a certain number of miles...at least that's the case in my State).

So, bottom-line is — ask an attorney and go from there.

Best wishes. Let me know how this turns out for your.

Val Barschaw
Author/Speaker/Advocate… and former Superior Court Clerk

In my years of hospice care, I can tell you that this is an important conversation to have with your parents before a crisis occurs.

Be proactive AND insistent in getting a plan in place. Call a family meeting or have an elder law attorney help.

This is SUCH an important conversation. Thank you so much for bringing it here.

This really resonated with me. As someone stepping into independent advocacy, I’ve seen how overwhelming the system can be for families. This work matters, and it’s needed more than ever. Thank you for speaking on it so clearly. I shared this on my LinkedIn post. I hope you don't mind. People should read this to understand what is happening, so change can take place. Again, great article!

Leona — what a GREAT and important topic!!! Thank you so much for sharing it.

If you'd like, you may also share it as a blog post. If you need help doing so, just email me at help@gnanow.org and I'll show you how.

This is so important to do sometimes. There are a lot of reasons why we forget to clear out the clutter periodically. I think that sometimes we fall subject to the fallacy that something we've invested a lot of time and energy in but isn't adding value to our lives will start doing so if we just keep at it a little bit longer, and a little bit longer. I also think that, in the U.S. at least, we tend to carry a deeply ingrained belief that quitting is inherently bad — and clearing out that clutter can at times feel like quitting. Letting go of something you’ve invested time, energy, or resources into can feel wasteful—as if the only acceptable option is to push through no matter what. We see this reinforced in messaging and marketing at times too, reinforcing the idea (Nike’s “Just Do It” being a classic example).

And yes—there are absolutely times when pushing ourselves matters, when stepping away wouldn’t serve us. But there are also times when not quitting, or not clearing out the clutter, is what causes harm.

That constant pressure to keep going can lead us to normalize chaos and clutter—both mental and physical—leaving little room for ourselves. I feel like this is especially true in roles like patient advocacy, where so many of us are deeply passionate and driven to support others, often at the expense of our own well-being.

What often gets overlooked is how much more we’re capable of when we allow ourselves space—mentally and physically. That the space isn’t something that always needs to be filled. In fact, protecting it can strengthen our ability to function, to process difficult emotions, and to feel more grounded and present in both our personal and professional lives.

Good advice for clients, patients and advocates alike!

David, this is exactly the systemic issue Cheryl is pointing to — and there's an underutilized resource worth knowing about.

The Older Americans Act established the National Long-Term Care Ombudsman Program, staffed by both paid and volunteer advocates. Critically, they work for residents, not facilities. They can address individual resident concerns and pursue systemic facility issues. Complaints feed into state and national trend databases that can drive regulatory action.

As a former Texas ombudsman, I can tell you SNFs were prioritized in caseloads over assisted living, even though both are covered under the OAA. The program is lean, but strategic.

As a first step I recommend looking for the ombudsman contact information typically posted at the facility entrance. Introducing yourself creates a ready partnership for exactly the issues you're describing.

Understaffing explains resource constraints. It doesn't excuse poor care.

Renea Stasaski, BCPA
Sonoran Wayfinders
Advocate's AI Atlas

Thank you for asking such an important, complex question!

Oh gosh, this is such a major problem! And if I knew how to fix it, I would be a wealthy woman! I experience this both as a clinician and as an advocate. A few strategies that are absolutely not fixes:

1. bundle needs as much as possible so there are fewer calls on the call light. I know it's not always possible! If possible, build ADL routines so they're more anticipated/scheduled and more efficient.

2. let the staff know they're appreciated, with words and maybe snacks. Let managers know who is excellent.

3. escalate as needed if/when there are safety concerns

4. aim for non-profit care centers whenever possible

Well, that's a few thoughts to start the conversation.

Cheryl Kauffman, PT, BCPA
Seattle Patient Advocates

Thank all of you, so much, for your input. It means the world to me how thoughtful you have all been in trying to contribute positively to this situation.

You all are echoing something I knew from the start: it's all about how she's framed. It was my goal from the start to figure out what angle I can take...how to change how the healthcare system is seeing her. Perspective rules everything, doesn't it? And as an advocate, and a nurse, my goal is always collaboration first...I don't want to go into this meeting opposing things. That won't get my client what she needs.

You all have given me several excellent pieces of information and things to be thinking about. Though I have so much experience, I will constantly be learning and leaning into this amazing community.

Depending on how this meeting goes tomorrow, I may call on those of you who have offered to assist. As a type A personality with a fiery passion for this, I absolutely need to make sure I've done everything I could. My conscious won't allow anything less.

AnnMarie — please do share via the private facebook. All thoughtful comments/advice is welcome.

Again, thank you.

Hi Blaire,

I spoke in depth with the girl's aunt when they were searching for an advocate. I am so sad you are still running into denials. So many wrong steps have been taken when this family is willing to do anything for her. What is wrong with people!?!?

I spoke with some contacts who were willing to help as best they could. I am happy to pass them on to you.

I am not nearly as capable as you with this case, but I am here to lend a familiar ear. I am also available if the family needs anything I can help with for caregiver support.

Thank you for sharing this case and for using PA360º as a thoughtful sounding board. Your approach reflects both humility and resourcefulness. Creating space for peers to weigh in not only opens the door to new perspective, but can be grounding and clarifying in complex situations like this. Even advocates benefit from the insight of other advocates. I appreciate your openness and commitment to getting this right, Blaire.

Hi, Rachel!
Do you mean you are trying to become an advocate who accepts Medicare?

if so, there are a number of agencies around the country that accept Medicare. It is my understanding that an RN must work under a licensed supervising clinician, and the setup is long, indepth and complex. I know of one RN advocate who is deep into the process and actually building a training program she intends to offer once she has reached sort of 'a good endpoint' with the process.

I hope other nurses might respond here to provide more information, although if this question is about accepting Medicare as reimbursement, it's likely in the wrong conversation space, and I can move it for you.

If you would like the list of agencies that we at GNA are aware of and have had at least some contact with/knowledge of, feel free to ask. I'll gladly share it here.

Thanks for sharing, karen! Id love to see you start a conversation about long term care claims, knowing that's a niche you know well.

7 years

great question! thanks for sharing it.

Thank you all for responding!

I do a 90 minute virtual review with clients or entire families for 400.00 that includes referrals and assessment of acute needs. If they want me to review documents and develop a medical profile and care plan with resources it is 1500. If they need in person advocacy services and the above, I charge 2500 for initial ten hrs of work then 250/hr for additional hrs. Most of my clients choose the third option as I tend to get very medically complex cases.

I do this as a part of my services and I am happy to take on custom requests.

Lisa, I fully agree with your perspective and appreciate you raising this important issue. As one of the “old-timers” in patient advocacy for over 12 years, I continue to work on a limited, highly selective basis, guided by an approach that prioritizes time, trust, and personal connection.

My core philosophy remains unchanged: to be a true champion for patients and their families as they navigate an increasingly complex healthcare system. Many who need advocacy simply cannot access it due to cost. For me, the greatest reward has always been human, not financial, and I do everything I can to work with Medicare clients and expand access for those who might otherwise go without support.

I also believe our services should not be excessive. I can not relate to fees of even 200.00 or more. At the same time, I respect advocates for whom this is their primary profession—they must charge fair, realistic, and justifiable rates.

I am encouraged that Umbra is helping create pathways for Medicare reimbursement. While modest, it represents an important step forward—one we should all support.

I agree Lisa, it's getting uglier indeed.

I had to Etch-a-Sketch my business model almost immediatly when I opened my independent advocacy practice. My LLC was formed in February 2020 and the world closed down in March due to Covid. But the changes I made allowed me to serve clients all over the USA remotely. Over the years my business has evolved. The unforseen changes I had to implement early, have benefited throughout the years. Being able to adapt to client's needs is something I continue with to this day.

Hi Lisa! Such a great post — thank you for sparking this conversation. When I built the documents and workflow for my practice, I found myself asking the same questions: Who is my patient population? What can I help with? Who are my partners?

The more I explored advocacy, the more I realized how broad our work truly is. We can support almost anyone, in so many different situations, and I worried that defining my services too narrowly might limit how clients see their own needs.

That’s why I offer a short, free consultation. It gives me space to ask questions clients may not think to ask, listen to their concerns, and highlight support they may not realize an advocate can provide. That brief conversation often brings clarity for both of us.