ADVOCATE for Person-Centered Care with Dr. Brittan Barker
I'm so excited to have one of my good friends, Dr. Brittan Barker.
I love her so much, and she's like part of the reason that I went to grad school myself. Her educational mind inspires me, and her parenting mind inspires me. So she got her Master's degree in cognitive development psychology and then her Ph.D. in speech and hearing science.
She’s an assistant professor at Utah State University, in the department of communicative disorders and deaf education.
Today she’s going to tell us about person-centered care with a follow up in the next blog — on HOW TO ADVOCATE for your child from assessment intervention.
What is person-centered care?
Person-centered care is a philosophy, first of all, and the idea came about quite a bit back like in the sixties with a famous psychologist named Carl Rogers, and there is always chatter about how this could get carried into other ways and other areas of medicine and I feel like it's only been the past ten-to-twenty years where we're seeing it pop up in other areas.
Person-centered care is a philosophy of care, where the family or the individual is going to be the center of the show. So the family or the patients know exactly what they need. They know exactly what their daily life looks like and so us as professionals whether it's a doctor or a teacher or a special education teacher, whomever, should always look first and foremost to the person at the center of the care. When we're adults were talking about the actual patients and when we're talking about kids, especially really young ones the people who should be at the center of the care are the family home. So maybe this is Mom and Dad or maybe this is Grandma. Whoever is that primary caregiver when we're providing care to the family. We should always talk with and ask the family.
In my home, I’m dealing with some speech issues right now with my almost-two-year-old and she's speech delayed and she's so like fun and spunky and all these things — but when her behavior starts to get worse. It's because she doesn't have the words to communicate what she needs and so I'd really like speech to help her behavior anyway, so I contacted some support and they assessed her and yes, she speech delayed and we got services.
So in this situation, I guess what leads you to seek out additional support if your needs aren’t being met from the original support? I got the support and in my situation I got the support, but I still feel like I'm not getting the person-centered care that I would like, and kind of avoiding saying that because I don't want to shame anyone… but it's also in the middle of a pandemic, so things are just going interestingly.
I actually sought out a different professional and so I guess I my question to you since you've worked with this personally and professionally:
What do you do to get that person-centered care at the place where you're at and how do you know when to seek other intervention or support services if they're not meeting you you need to be?
Great question. So first of all, I'm really impressed and really proud of you without knowing that the technicalities and the research and these terms what you did is so good and what I would encourage other families to do you trusted your gut you knew something felt strange or off or not ideal in your first professional does that mean that that professional who came into your home and was supporting you could not be of help to other families mom. Absolutely not— it just meant that that person was not meeting you and your family at the center of care when you needed it most and the steps that you took doing research advocating for your needs and your kiddos needs are exactly what families have to do.
This becomes really challenging for some people depending on the situation.
I have a daughter in elementary school. And as you know, cuz we have such a long history professionally and involved interpersonally as well. My kiddo has a lot of special needs. She has a lot of accommodations that she means to actually help her thrive, that is outside of what normal expectations would be happening in the classroom.
For some people, it's just about calling a friend or doing a quick Google search. But what I want to encourage parents to do when they're faced with challenges like you mentioned and I've also had these challenges. I've had them for my kid’s health care and I've seen it time and time for families that I work with up at the University. Regrettably. The way things are structured in America. We don't talk a lot about this week. Are you some old ideas from the 1950s that the doctors are always right and we should trust what they're saying this attitude carries even further into different cultures and communities for example, the African American Community when we know that there are history of trust or foul play between professionals and that community what I encourage people to do as we in the profession are shifting ideas to person centered care. I want families and patients and people to start off getting their ideas of what's acceptable and meets their families needs.
I want them to shed those ideas that because I went and I talked to someone has incredible education and where it's just stunning white coat that they are right and they know what's appropriate these people have excellent education and experiences, but the fact of the matter is they are not experts on your family on your children.
Only the family members know that information only you as a person know what's best for you as an adult patient trust your gut. As you've said before Lauren to trust your gut, if something feels weird. You don't have a label for it and you don't know why it's okay to up and find another professional when it's within your means.
And to be able to do that will help your child succeed and help your family work towards that success. But regrettably, there's no quick fix. There's no Silver Bullet. If you live in a rural community, if you're constrained by finances or job placement, especially like things are now with covid-19. Sometimes it's not as easy to up and find another professional when that's the case. I encourage families to have a heart-to-heart with their professional and use words. Like I don't think you're listening to me or I would like you to stop and listen carefully to my story. You told me ex is best for my child, but my child goes to a Grandma's three times a week and we can't Implement that that treatment that you're suggesting. Can we talk again about what happens in my house so we can figure out a better treatment for our family.
I think for me personally, I just got really lucky and a twisted way, you know that I had had all this education and experiences and then when I had my own my own kiddo realizing that some of the things I had learned formerly could really benefit my family and benefit my child, but I have to tell you to do that as a parent. I'm sure you've had this experience just like anything that's hard.
It's filled with a lot of anxiety and fear and concerns before you speak up and you use your voice and you have to or at least me as a parent. I had to conjure up a lot of bravery and confidence that this wasn't working for my family.
We we think that these are the the rules this is why the professional tells us or these are the Norms on a test. So this must be where my kid is and if she's not there she's feeling we hesitate to say when we're concerned or when we have a different perspective.
All I can tell parents is to take a deep breath and be brave cuz after you have that first conversation, everyone will be on your side to help support you in your kid, but it takes a lot of bravery and a lot of energy for a parent to get to that point and frankly, there are plenty of parents who will tell you, it’s exhausting to be an advocate for your kiddo. It's exhausting to stay on top of it.
All I can tell parents is to take a deep breath and be brave cuz after you have that first conversation, everyone will be on your side to help support you in your kid, but it takes a lot of bravery and a lot of energy for a parent to get to that point and frankly, there are plenty of parents who will tell you, it’s exhausting to be an advocate for your kiddo. It's exhausting to stay on top of it.
Find More from Brittan
The easiest way to find out more about Brittan and some of the work she does, especially our research would be at our Labs website. Her lab at Utah State is called the Aural Rehabilitation Lab. USU’s Rehabilitation specifically supports rehabilitation for people who are affected by hearing loss.
Website is www.BrittanBarker.com.
Instagram @auralrehablab
Website Supports
- Institute for Patient- and Family-Centered Care https://www.ipfcc.org/bestpractices/sustainable-partnerships/background/pfcc-defined.html
- Dr. Barker’ Aural Rehabilitation Lab at USU www.brittanbarker.com
- Baby Watch Early Intervention program for children aged 0-3 years who live in Utah http://health.utah.gov/cshcn/programs/babywatch.html
- How to find an early intervention program for children aged 0-3 years in your state (English) https://www.cdc.gov/ncbddd/actearly/parents/states.html
- How to find an early intervention program for children aged 0-3 years in your state (Spanish) https://www.cdc.gov/ncbddd/spanish/actearly/parents/intervencionTemprana.html
- How to request an initial evaluation for special education services for your elementary school-aged child (with model letter; English) https://www.parentcenterhub.org/evaluation-2/
- How to request an initial evaluation for special education services for your elementary school-aged child (with model letter; Spanish) https://www.parentcenterhub.org/carta-evaluacion/
- What is an IFSP? https://www.understood.org/en/learning-thinking-differences/treatments-approaches/early-intervention/ifsp-what-it-is-and-how-it-works
- What is an IEP? https://www.understood.org/en/school-learning/special-services/ieps/understanding-individualized-education-programs