MI-LEND Video Resource: Family-Centered Care (Week 6)

Estimated read time: 1:20

Summary

The video presented by DDI at WSU focuses on Family Centered Care, particularly in relation to the Maternal and Child Health Bureau. The speaker explores the principles and definition of family-centered care, emphasizing the importance of cultural competence and the medical home model in promoting family-centered care. The discussion also traverses topics such as family strengths, resilience in face of challenges, and the historical development of the family-centered care model. The video includes insights from various stakeholders, personal anecdotes from the speaker, and an emphasis on the mutual respect and partnerships between families and healthcare providers.

Highlights

Emphasizing family-centered care's foundation in partnership and trust between families and professionals. 🔑
Understanding the cultural differences and adapting healthcare practices to respect and incorporate these values. 🌐
Exploring the medical home model's role in ensuring cohesive and comprehensive care for children with special health needs. 🏡
Anecdotes showing the resilience and unique strengths within different family structures. 💪
Validating family experiences and emotions, especially when dealing with complex grief processes. ❤️

Key Takeaways

Family-centered care emphasizes partnerships between families and health providers, respecting each family's unique strengths, cultures, and needs. 🤝
Cultural competence is vital in providing effective family-centered care, as it allows for more personalized and respectful interactions. 🌍
The medical home model is a key component of family-centered care, aiming to coordinate care efficiently and meet the comprehensive needs of children with special health needs. 🏠
Families are the constant in a child's life and are essential partners in care coordination, leveraging their knowledge to ensure effective healthcare delivery. 👫
The grief process in families with children having special health needs can be complex and non-linear, requiring sensitive handling and understanding by care providers. 😢

Overview

The presentation on Family Centered Care by DDI at WSU begins by outlining the key principles of this model, highlighting the importance of cultural competence and personalization in healthcare. By focusing on the unique strengths and needs of each family, healthcare providers can forge stronger partnerships and deliver more effective care.

Throughout the video, the speaker shares personal anecdotes that illustrate the resilience found in many families and the crucial role of mutual respect and trust between families and healthcare providers. The inclusion of various personal stories helps to paint a vivid picture of the practical application of these principles.

Additionally, the video explores the medical home model as a central concept for coordinating care, ensuring that all healthcare interactions are efficient and rooted in the principles of family-centered care. This comprehensive approach helps in meeting the diverse needs of families, further solidifying the benefits of such a care model.

Chapters

00:00 - 00:30: Introduction to Family-Centered Care This chapter introduces the concept of Family-Centered Care. It outlines the primary learning objectives, including a comprehensive definition of Family-Centered Care and its relevance to the Maternal and Child Health Bureau. The focus seems to be on how Family-Centered Care is integrated and emphasized within state government frameworks, particularly in relation to maternal and child health initiatives.
00:30 - 01:00: Principles and Challenges in Family-Centered Care The chapter 'Principles and Challenges in Family-Centered Care' explores the definition and application of family-centered care principles. It emphasizes the significance of cultural competency in enhancing care for families and discusses the integration of the medical home model to foster family-centered care. The chapter further delves into the concept of care coordination within medical homes as a method to support effective family-centered practices.
01:00 - 01:30: Family Dynamics and Resilience The chapter discusses the concept of family as defined by the Beach Center on Disability. It emphasizes that families consist of individuals who consider themselves as a family, regardless of blood relation or marriage. The key aspect of being a family is the support and care members provide each other regularly. The narrative highlights the diverse nature of families, using the example of a small single-parent family comprising a mother and her daughter, while the mother's older son lives independently.
01:30 - 02:00: Defining Family Strengths The chapter 'Defining Family Strengths' explores the concept that families are defined uniquely by each individual and not necessarily by blood relations. It emphasizes that every family possesses unique strengths along with other qualities. The focus of the discussion is on understanding these strengths in the context of diverse family definitions.
02:00 - 02:30: Family Strengths as a Resource The chapter focuses on identifying and discussing family strengths as a valuable resource. Participants are encouraged to actively engage in discussions by sharing key strengths of their own families, both internal and external. The emphasis is on recognizing and appreciating unique family strengths, creating an opportunity for individuals to express pride in their family's attributes and characteristics.
02:30 - 03:00: Creating Family-Centered Therapy Plans The chapter titled 'Creating Family-Centered Therapy Plans' opens with a personal account of resilience from a caregiver named Lily. She shares the challenges she faced upon receiving a prenatal diagnosis of Down syndrome for her child. The situation was further complicated by the development of a medical condition called High Drops, which posed a significant risk to her child’s life before birth. Additionally, the narrative highlights financial hardships experienced by Lily, alluding to various struggles endured throughout the journey. The central theme emphasizes the importance of resilience and adaptability in the context of dealing with medical and personal challenges as part of creating effective family-centered therapy plans.
03:00 - 03:30: History and Development of Family-Centered Care The chapter discusses the importance of resilience in family dynamics, especially during times of hardship. It highlights the personal experience of a family coping with challenges such as job losses and surgeries. The narrative focuses on how families can grow stronger through adversity, indicating resilience as a key family strength. The chapter invites others to reflect on and share the strengths within their own families.
03:30 - 04:00: Building Family-Professional Partnerships The chapter explores the foundations of developing strong family-professional partnerships. It includes testimonials and insights from different individuals. Michael Palmer acknowledges the support and understanding of his family. Sharon Milberger highlights the importance of open communication. The Turners, represented by Jane, express their joy in spending time together, emphasizing the value of family cohesion. Molly shares her family's reliability and supportiveness, illustrating key strengths essential for fostering effective partnerships. These personal accounts collectively underscore the chapter's theme of building robust, trust-based relationships between families and professionals.
04:00 - 04:30: The Concept of Medical Home in Family-Centered Care The chapter discusses the importance of identifying and utilizing personal strengths to provide effective care in a medical home setting, emphasizing a family-centered approach. Participants are encouraged to think about how the strengths they or others possess can be leveraged to support families in a healthcare environment.
04:30 - 05:00: Medical Home Characteristics and Certification The chapter discusses the concept of family-centered care within medical homes. It emphasizes the importance of involving families in therapy plans to achieve better outcomes. An example is given of how utilizing the family's strengths can empower and enhance the treatment process.
05:00 - 05:30: Care Coordination in Medical Homes The chapter on 'Care Coordination in Medical Homes' highlights the importance of family-centered care by acknowledging family strengths. It emphasizes the need to create opportunities for families to spend more time together, such as outdoor activities in parks. By identifying and leveraging a family's unique strengths, care providers can offer better care that aligns with the family's needs and preferences. The conversation underscores using these strengths as a tool to enhance care coordination, ultimately leading to improved healthcare outcomes.
05:30 - 06:00: Region 4 Midwest Genetics Collaborative and Care Coordination The chapter discusses the Midwest Genetics Collaborative and the importance of care coordination for families. It highlights the significance of family strengths and developing a care plan or therapy to support a child, even in the absence of direct supervision. The importance of thinking outside the box and utilizing unconventional methods to improve care for families is emphasized. Input from different participants is encouraged to enhance the family care plan.
06:00 - 06:30: Parental Role and Involvement in Care The chapter discusses the development and advocacy of family-centered care within the healthcare system, especially concerning children with special health care needs. It credits the Maternal and Child Health Bureau's leadership in developing this concept starting around 1987, following an initiative by US Surgeon General C. Everett Koop. The initiative called for a coordinated, family-centered, and community-based care system. This approach was incorporated into Title V of the Social Security Act and reaffirmed in 2004. The chapter emphasizes the ongoing importance of parental role and involvement in care for children with special needs.
06:30 - 07:00: Understanding Culture in Family-Centered Care The Family Voices organization organized a meeting that included families, providers, researchers, and policymakers to focus on family-centered care. The goal was to understand and utilize the family-centered care model to enhance the treatment of children with special healthcare needs and support their families, thus involving all interested parties.
07:00 - 07:30: Cultural Competency and Humility The chapter explores the concept of Cultural Competency and Humility within the context of family-centered care. It highlights a mutually agreed-upon definition set forth by the Maternal Child Health Bureau, which emphasizes a respectful family-professional partnership. This partnership is key to ensuring the health and well-being of children and their families, honoring the strengths, cultures, traditions, and expertise that each party brings to the relationship. Family-centered care is depicted as a practice standard that is conducive to positive outcomes.
07:30 - 08:00: Navigating Cultural Barriers in Healthcare The chapter discusses the metaphor of building a structure to explain the concept of family-centered care in healthcare. It emphasizes the importance of laying a solid foundation before adding additional elements, highlighting the need for strong core principles in delivering high-quality services. The narrative implies that just as in construction, successful healthcare systems require careful planning and groundwork, especially when aiming to deliver culturally sensitive and family-centered care.
08:00 - 08:30: Grief and Loss in Families with Special Needs Children The chapter emphasizes the importance of a strong partnership between families with special needs children and professionals. It highlights the need for solid family-professional relationships, which can be facilitated through joint training sessions. These sessions aim to educate both families and professionals on how to build and maintain effective partnerships that support the child's needs. This foundation is crucial for navigating the challenges of grief and loss that families may experience.
08:30 - 09:00: Supporting Families through Grief The chapter titled 'Supporting Families through Grief' discusses the importance of partnerships and relationships within the framework of family-centered care. It emphasizes that a solid foundation for any relationship, particularly in caregiving, requires certain elements. These include the establishment of ground rules, recognizing commonalities among the parties involved, and understanding the necessity of building strong partnerships in all areas of life. The concept underscores that effective support during grief involves collaborative effort and mutual understanding between caregivers and families.
09:00 - 09:30: Resources and Support for Families The chapter on 'Resources and Support for Families' emphasizes the importance of mutual understanding and relationship building in family-centered care. It highlights the core principles necessary for developing strong partnerships and invites open discussions about what is needed in establishing effective relationships.
09:30 - 10:00: Providers' Role in Supporting Families The chapter discusses the essential components for building honest partnerships between providers and families. Key elements include trust and a mutual understanding of each party's goals, even if they are not necessarily the same. These elements are crucial for fostering strong and supportive relationships.
10:00 - 10:30: Sibling Support and Family Dynamics The chapter explores the crucial partnership between healthcare providers and families, focusing on supporting children and strengthening family dynamics. It emphasizes working collaboratively to ensure the best outcomes for the child while also enhancing the overall well-being and resilience of the family. The narrative highlights the dual goal of improving children's outcomes and empowering families.
10:30 - 11:00: Validating Family Concerns and Needs The chapter emphasizes the importance of mutual respect in relationships, particularly between families and professionals. It highlights how parents often have instincts about their children and the importance of listening to and validating these instincts. Parents are with their children constantly and understand them well, thus professionals should acknowledge and respect the parents' insights and concerns about their children.
11:00 - 11:30: Creating an Inclusive Supportive Environment The chapter discusses the importance of creating an inclusive and supportive environment for children with disabilities. It emphasizes the pivotal role parents play in understanding and advocating for their children's needs, as parents know their child best. The chapter stresses that professionals such as therapists and teachers should listen to parents and see the child beyond their disability, recognizing their unique preferences and interests, such as a child's love for baby dolls.
11:30 - 12:00: Dads' Role in Family Support The chapter discusses a story highlighting the importance of recognizing individual roles and desires within family dynamics. The focus is on Lily, a child with Down syndrome who has a nurturing personality and loves to care for people. In a school scenario, Lily clashed with another girl who also wanted to play a mothering role. The conflict arose because both girls wanted to be caregivers, illustrating the necessity of understanding and respecting individual roles in family support systems.
12:00 - 12:30: Conclusion and Q&A This chapter focuses on addressing families' concerns about trusting professionals. It emphasizes that professionals undergo extensive education and training out of a genuine desire to care for and make a difference in children's lives. The chapter acknowledges families' apprehensions and reassures them about the commitment and expertise of those working in child-related fields.

MI-LEND Video Resource: Family-Centered Care (Week 6) Transcription

00:00 - 00:30 so today I will be speaking on Family Center Care and some of the learning objectives are will be defining family centered care and really defining family centered care how it relates to the maternal and child health Bureau which is um where I work um through the state government which just pretty much the focus of the family centered care
00:30 - 01:00 definition that we focus on here um but we also help you understand you know using the principles of family centered care while working with families understanding how the role of cultural competency um is you know can be um guided in your family centered to care with families and also um understand how to utilize medical home model as a way to promote family centered care through care coordination within that medical home model so and defining family and
01:00 - 01:30 strengths the beach Center on disability defines families as a family includes the people who think of themselves as a part of a family whether related by blood or marriage or not and who support and care for each other on a regular basis so as we all know families can look very different from one another for example my immediate family is very small I am a single only parent and it's just me and my daughter Lily I do have a 29-year-old son who is out on his own
01:30 - 02:00 and lives about an hour and a half away but in my home it is just me and my daughter Lily um so we know that you know families do not have to be blood we you know everyone defines their family in their own uni unique way and with that in mind we also know that you know families all have you know very unique strengths in addition to um other qualities but today we're in we're thinking about families and family strength
02:00 - 02:30 I was wondering if maybe some of you um raise your hand and then michae will unmute you as we go through this we're going to try to have a lot of discussion around this if you could come up with a few words that could identify key strengths within your own family or your external family trying to think of a couple strengths of my own family while you guys feel free to brag here you're bragging rights right now and um a strength of me and my family
02:30 - 03:00 is I oh very resilient so I have um I we we are very resilient uh Lily and I have been through so many things together um from you know receiving a prenatal diagnosis of down syndrome and her developing High Drops and almost passing before I even had her to many struggles you know from Financial struggles because I wasn't
03:00 - 03:30 able to work um almost losing everything because I was at the hospital and at that time not able to hold a job through many surgeries that Lily's been through and moves for my job and you know we always come back stronger together and so I think resilience is a great family strength that I see with a lot of families does anybody have any family strengths that they would like to identify within their own family uh we do have a couple uh suggestions coming
03:30 - 04:00 in Michael Palmer says I would say my family is supportive and understanding uh Sharon milberger says open communication those are great ones so if we're thinking about some of the strengths that Sharon identified and I'm sorry Mike who was the other the other gentleman uh Michael and Jane Turner says we enjoy being together oh and I have uh one from Molly Molly go ahead um my family is very reliable and supportive
04:00 - 04:30 those are really important strengths to have too and you these are all great strengths that all of you are coming up with I really appreciate your input on this is there anyone else so if we think about some of these strings that everyone has just brought up um can you think about how you can use those strings as a way to help you provide care for these families or maybe an example of how you can use these strengths to really benefit these
04:30 - 05:00 families or promote that family centered care piece all right I was going to say for the families that you know enjoy spending time together um you can help to sort of model or create therapy plans that would include you your family to help um to achieve better outcomes but kind of involve the family in the treatment plan absolutely that was an excellent example of how you can use his family strength to really empower the
05:00 - 05:30 family and like you said you know they like to be together so let's work on things that can bring them together where they feel like they are you know spending time together as a family maybe you know out um at a park whatever it may be but I love that that was an excellent example when thinking about the different strengths for families that you've come up with or within your own family how could you use that strength as a way to provide better care for families or family centered care or you
05:30 - 06:00 know think of those family strengths and developing um a care plan or something else um therapy to work with a child when you're not there so that's okay we can move on I appreciate everyone that did offer some input and um you know it's just sometimes just a good way to think about outside of the box and how you can use the things that we don't normally think about as a way to improve care for families
06:00 - 06:30 so the maternal and child health Bureau provided leadership in the development of the family centered care concept way back in I believe 87 when US Surgeon General C Everett Coupe made a call to action for a system of care that was coordinated family centered community-based care for children with special Health Care needs in their families this concept was mandated in title five of the Social Security Act and then again in 2004 the national
06:30 - 07:00 family voices organization held a meeting um bringing together families providers researchers policy makers they wanted to bring everyone together so they could really hone in on the concept of family centered care and and what does that mean and how can we utilize a family centered care model in order to improve the care of these children with special Healthcare needs and their families and so that's why they brought you know all interested stakeholders together
07:00 - 07:30 and um so they came up with a mutually ACC Creed upon definition and according to the Maternal Child Health Bureau the definition that came out of that meeting is that family centered care assures the health and well-being of children and their families through a respectful family professional partnership it honors the strengths cultures traditions and expertise that everyone brings to this relationship family centered care is a standard of practice which results in
07:30 - 08:00 high quality services so when we think of family centered care we can really um imagine creating a building from the ground up and so you know if you're building building from the ground up one of the most important parts is to make sure that you really have a solid foundation on the ground before you start adding those bricks and building upward and so we kind of think a family centered care um in that building concept where the
08:00 - 08:30 foundation is the partnership between the families and the professionals and that's one of the reasons it's really important to make sure that you work on building a solid partnership with the families that you work with along the way I do a lot of trainings um for families and for professionals but um in the trainings that I do for families we really talk a lot about building their family professional Partnerships and and what does that mean you know um we think
08:30 - 09:00 about Partnerships we partner with people you know in many areas pretty much every area of our life we have to build relationships so when we're thinking of this family centered care concept and thinking of the foundation being a partnership it's really a relationship and in order for anybody to have a relationship with somebody else you have to have certain things and you know we have to have you know probably some ground rules between each other some commonalities and some
09:00 - 09:30 Mutual understanding if we're going to build a good relationship right so when we're thinking of family centered care in um a more of a relationship building aspect you know you can think of the building blocks um you know being the core principles of the Family Center Care so you know and we can open this up for um a good discussion if anyone like to do you need when you're building a partnership with someone would anyone like to chime in what are some of the things that you know for so I would
09:30 - 10:00 guess for me one of the things I would really have to have in to build an honest partnership with someone is I'm going to have to be able to have trust I'm going to have to trust that person um in order to build a strong partnership and can anyone think of something else um I would say not necessarily the same goals but definitely a mutual understanding of the goals of both parties right absolutely and so and and this instance and the you know think in
10:00 - 10:30 the partnership between um the provider and a family the mutual interest would be of that child that child that's in the center right and so we come together um to work in the best interest of that not only the child but the whole family and how we can make make the outcomes for the child the best at the same time help the family become stronger right um you know because many times you would like to also you know have to have
10:30 - 11:00 that respect I don't think anyone can have a good relationship with anyone without mutual respect and this is one of the things that I do share with families all the time um is because you know many times we have parents go in there you know but my instinct is telling me this and I I want you to listen to me and this is my child and um yes we we want to acknowledge that parents are there 247 parents know their child best they are with their child all the time um they you know professionals
11:00 - 11:30 come in and out therapists teachers we have a lot of people in and out of our CH our child's lives but the parents really know their child best and we want professionals to hear that we want professionals to know that our child is more than just their disability um we want the professionals to know that you know what our child likes to do for my daughter Lily she's 12 and she still loves baby dolls now I love baby dolls so I was like 10 so we can't just blame
11:30 - 12:00 it on down syndrome but um you know she loves baby dolls and that's one of the things she loves she's very motherly and she loves to care for people and that's important to note and many people um of the professionals that are work with her because for instance in a school issue she was really butting heads with this other girl and what how what turned out is this girl really wanted to Mother Lily and take care of Lily but Lily doesn't want to be mothered she wants to take care of other people and both these girls had the same goal in mind um but
12:00 - 12:30 neither one of them wanted to be taken care of so um when I also speak with families so to let them know you know they do trust the expertise and the education that the professionals bring you know I share with families you know people didn't go to all that school just so they could come here and give you inaccurate information you know professionals they went through a lot of school because they care about children because they wanted to work for children and they wanted to make a difference in
12:30 - 13:00 the lives of families so you know you have to have that Mutual Trust on both ends and be open to communicating and sharing that information um is there anything else that any of you can think of in order to build a relationship that you need yeah um going off of that I think something that's invaluable is um the healthc care provider and the family really working together and I think as healthc care provider our goal is to um you know
13:00 - 13:30 discuss with the family all the options and then value their opinion and which option they think they'd like to go with and which option they would like you know think would work best for their child and with their own personal goals for their child so I think really valuing what the family you know what their uh goals and objectives are I think makes a big difference and really builds upon that trust
13:30 - 14:00 absolutely um and I think that goes a long way to building that strong partnership where you know that if the family's struggling they're going to be more open to maybe sharing some information with you that maybe with another fighter they wouldn't feel as comfortable sharing because they know that your value you you understand their values and you also consider those and understand what those values mean to that family okay so now we're going to talk about um family centered care within a medical home and so one of the
14:00 - 14:30 things um I would like to ask all of you you know um when you go to a provider what are some of the things that you would hope your provider would off you know offer what are some of the things that you would like to see from from your doctor's office okay so I'll give you a good example um I pretty much work 9 to 5 it's pretty um some weekends some nights here I'm here and um after 7 tonight but
14:30 - 15:00 majority of the I'm Monday through Friday 9: to 5: and so it's very helpful for me for my daughter's providers to possibly offer times when I'm not at 9 to5 now a lot of especially a lot of the you know children's hostels and Etc where we go to do not offer after our um appointments but that is one feature that I would be really excited about Saturday appointments or other
15:00 - 15:30 appointments outside that normal 9 to5 um that's kind of where I'm going does anybody else have anything they could think of all right well um you you can write this down and maybe a good discussion at our face Toof face or at another time but um so I just you know within this medical home concept um it was actually first introduced back um the American Academy of Pediatrics in
15:30 - 16:00 1967 and you know really in the beginning this is really a way as to um Define a place that would be the center of the child's record you know it really um the point was to have one centralized local record that um would have all the information that your provider would need to see especially in regards to the care of children with special healthc care needs and um since then it's you know revolved and we have the not only the
16:00 - 16:30 um the patient centered medical home um Family centered medical home um but in the beginning it was really to provide that one place where they could have the um child's record that you know everything could be held together all about the child so it wasn't in pieces everywhere and I assume all of you know what a medical home is um can all of you raise your hands if you do know what a medical home is I guess I w't won't be able to see if you raise your hand or
16:30 - 17:00 not but yep several several people are okay great so um I won't go into all the details I don't know like I said I assume that this is taught somewhere in your within your clinical training but maybe not maybe not at the college I I don't know um but the Family Center medical home is isn't a building we do this a training for families um discussing medical home and and you know educating families about medical home because most Ames have never heard of a medical home when we do a training um on
17:00 - 17:30 care coordination and we look at families and we ask them does anyone know what a medical home is you know it's like the the deer cotton headlight they have no clue what we're talking about um but everyone knows that they want one they like whatever it is it sounds great can you sign us up but you know it really isn't it's not a building it's not a home um or anything like that but really it's a model of Health Care delivery and um like I previously stated you know it was uh the American Academy
17:30 - 18:00 of Pediatrics defin the medical home in a policy statement um back in 1992 and you know since then it's really been developed further and um as a way to deliver that Primary Care um that is has a variety of characteristics that will ultimately um help a contain cost um result in improved Health Care outcomes for uh children with special Health Care needs and a variety of other
18:00 - 18:30 things just one moment this other computer out of here hi Lisa uh Al Alyssa says that she is not trained on that model so oh great okay so um in the brief definition that I gave you did that help Enlighten you I we're going to go into more but do you have more questions I didn't want to go into
18:30 - 19:00 too much detail although we will go into more detail right now um so I just want to make sure that that makes sense to you what I said so far what was shared on the screen these right here are the characteristics of a medical home now many um medical homes are um actually so we're in the state of Med Michigan it's a way to deliver this Primary Care um and for instance um my daughter's pediatrician Dr Jane Turner
19:00 - 19:30 who is also on the myen team you know their um pediatric practice is considered a medical home and part of and maybe Jane can chime in here um from the provider side and um give a little more insight into that um but they have to be able to show certain data and um show that they're able to meet the criteria for a medical home in order to be um Jane is it an accreditation or
19:30 - 20:00 it's a certification um this you can go either way there is um a standard way is to the ncqa which is an accreditation accreditation or the certification through a Blue Cross uh Blue Shield has a medical home um uh certification process where the practice has to show that they meet certain criteria one of which is what you just mentioned a couple of minutes ago of um having some evenings Andor weekend
20:00 - 20:30 hours having some accessibility um openings for for individuals and families after 5:00 pm or on the weekends having a someone available around the clock to answer questions and that person needs to have access to the medical records so that can't be just someone a healthc care professional who just Wings it but someone who can um look up your child's record it needs the medical home needs to be
20:30 - 21:00 the uh responsive to the needs so that if uh an individual needs more time you can give them more time they need to have the information in of them when they see the child or family so again they're not flying by the seat of their pants so for instance one of the things that has happened to our practice over the last 10 12 years as we became more of a medical home as we've more we um track our referrals and make sure we get the
21:00 - 21:30 consult reports back and if any of our children in our practice are seen in the emergency room or hospitalized when they come into Clinic to see us we have that record before we go in to see the child the old standard was you go in and you see the child and then you pop your head out and say hey can you call the ER and get that report faxed to me and then you might get the report before the end of the day but long after the patient goes home a big part of the medical home is to be family Center to really um build
21:30 - 22:00 your practice around the needs of the the Pediatrics of the children and the families rather than driven by the convenience of the uh of the providers it's a hard one to get to because you we all like to run our businesses in ways that suit us but a big part of it is um to think again and make sure that it is indeed um meeting the needs and organized uh to meet the needs of of the uh of the the families that you serve
22:00 - 22:30 the other is it's comprehensive that you you meet all the needs in primary care you might need to refer to some specialist but the idea is you're there for acute care for preventive care and to manage um chronic uh health conditions so I'll stay stop there and uh take questions or comments thank you so much Jane for um sipping in and explaining it um from your perspective and what actually
22:30 - 23:00 happens okay great so um one way to receive you know we do a lot of talking about the importance of care coordination for children um with special Health Care needs and their families um I think at the last face Toof face you know we discussed that you know families have many many providers in their child's life and so instance for you know for my daughter Lily we she had providers at U ofm I think she has
23:00 - 23:30 three or four Specialists she sees an orthopedic doctor she sees ENT she sees Audiology um she also sees Cardiology out at U ofm and then we also have a pediatric opthalmologist out at Children's Hospital Michigan and then we also now have a pulmonologist within the Lancing area and our pediatric provider is here in laning so she has a lot of different providers and um it that care coordination piece is really important
23:30 - 24:00 for families and it's also a big piece of the medical home as well so for instance one of the things when I first moved to Lancing and took this job and um was connected with Dr with you know Dr Turner's pediatric practice you know my daughter was born and developed High Drops which is fluid in the lungs her lungs are collapsed and she was born in respiratory distress on event for about 10 days um and the ifu for over six
24:00 - 24:30 weeks but she had always had respiratory is issues um one of the things that nobody had ever given to me and actually prior to moving to Lancing when Lily was five she had been hospitalized a lot for bronchiolitis respiratory infections um any time she got sick it went straight to her lungs but nobody had ever given me an asthma action plan no one ever discussed an asthma action plan no one ever discussed with me that when I
24:30 - 25:00 started hearing that cup I could start using that rescue Med and so that was one of the things that I was given at Dr Turner's office and um I can assure you I'm sure that some of it is her imunity is getting better um but she has not been hospitalized for any respiratory issues not once since we've moved here seven years ago and another thing that they gave me um that they have what is a care coordinator within her practice that really comes in and discusses you
25:00 - 25:30 know other issues we may be having whether it is you know related to these you know behavioral issues in school or nutritional issues and trying to help get um her weight down um and healthy eating or H eating habits Etc but you know we really have a full team within that practice that helps to receive you know to provide this care coordination for us helps to get us referrals when we need to make appointments with new
25:30 - 26:00 doctors um and it's just you know really has been a blessing for us being up here and and the you know the quality of of Lily's health is done you know even though she still has moderate sever asthma and getting ready to go see pulmonology I mean really just knowing that I could start asthma meds ahead of time I just nobody ever shared that with me I did not know that and I think sometimes Maybe maybe providers assumed I knew that and it was just nothing I'd
26:00 - 26:30 ever known so um one of the other things um is if you know when we talk about accessibility um and so maybe her off their office doesn't offer Saturday morning appointments but I know if I'm having an issue with Lily and I call and I leave a message on the nurses line they generally call me back within an hour I'm I tell families this all the time and they're shocked and I'm like I can call those nurses they know Lily very well they call me back and you know
26:30 - 27:00 whatever the issue is maybe Lily has a ear infection and so maybe instead of having to bring her in every time maybe I get um you know refills on her eardrop medicine so that helps me from having to miss a full day of work Lally for missing a full day of school um because we miss a lot of those and that's where you know really um offering that care coordination piece within a medical home but the reason for genetics collaborative is is um has families that
27:00 - 27:30 are involved on their um Advisory Board and um they really work to come up with a family definition of you know what is care coordination and what does it really mean to families the Region 4 Midwest genetics collaborative defines care coordination as a needs-driven team-based process that values families as essential Partners care coordination is intended to integrate care among mult multiple service providers enhance the caregiving
27:30 - 28:00 ability of the family and maximize the potential of the child Region 4 families talk about what this definition means to them it's helping us understand where our resources are both in our local community and around our care center and things that are offered at that institutions we can't all do it ourselves you know care coordination we're like yeah I'm the dead hey I don't want anybody telling me how to run my kids life or what medicine he needs but all a sudden you're like I can't even SP and so we need to ask for help you
28:00 - 28:30 know parents should definitely be consider equal Partners in their children's care because they are the ones taking care of them on a daily basis cuz it really takes relationships and making connections with people we have a similarity now let's start to have some meaningful conversation we're invited into a care um team and our opinions were recognized in that process when there were decisions to be made they ask us to be a
28:30 - 29:00 part of that decision making parents are the ones who know their kids we are with them all the time when I call a doc and I say something's just not right I know my kiddo they need to listen she's kind of in the center of all those Specialties and all these service providers it's important for families to be really involved in the coordination of care because we receive all the information from these providers we need to know where to turn to because
29:00 - 29:30 even if you may know of one place to go they may not necessarily do all of their that care that that's needed nobody knows all the answers they need to provide them with the accurate terms and information so that the families can learn to be a partner in the care of their child I think it's important for families to be empowered to coordinate the care for their children because parents understand what it's like to live in the context of their own family
29:30 - 30:00 [Music] situation we know that they're happy we know that we've done the best that we can for them and we've given them every opportunity to be productive in society and I think that's that's really important in the beginning I took a lot of direction from medical providers in the middle of our journey I started to learn more things and today I feel like um I'm in the driver's seat for my
30:00 - 30:30 daughter's [Music] [Music] care okay great I'm actually glad that we're because um it like I said you
30:30 - 31:00 know I I I just rambled on about care coordination and what that meant but I think it's even more important when you're able to see families talk and really see um them talk and share what it means to them and um you know one of the things as you know families really want to be validated we want to know that um our opinions do matter and um that we appreciate you know all the time that you spend with us you know I know I can't imagine in the and age where um technology and there's so much
31:00 - 31:30 information it must make providers crazy I I can only imagine um because there's so much misinformation out there but you know parents they're always searching for answers and so you know the benefits of being in medical home is you know even like at Lily's provider's office even though Dr Turner's her remain pediatrician she has several partners and of course you know kids get sick a lot and you know we see who we see when we get there but pretty much they all
31:30 - 32:00 have seen Lily at one time or another and they all know us and you know it really feels like you know when we go there Lily actually loves going to the doctor now which you can ask Dr Turner it was a nightmare we would be dragging her in and holding her down about 10 of us um and she actually loves to go to the doctor now which is crazy for me to think but you know we do feel really supported there um that care coordinator within the medical home is able to we actually got a binder a medical home binder when we first started going there
32:00 - 32:30 um and had a huge listing of community- based resources and seeing as I was new to the Lancing area that was really helpful for me because I had no clue about really anything at that point um but it you know that it's being able to partner with somebody and know that you're able to um have that Mutual dialogue um it really matters and making families feel more comfortable and more confident to be able to say hey I don't really know and maybe things aren't
32:30 - 33:00 going that well where you know without having that strong partnership that you know it maybe they wouldn't have felt that comfortable opening up and saying those things because you know can be really intimidating being a family member with you know somebody um who who has this degree who has all this knowledge and sometimes you know um it's hard to even say that I have no what you just told me you know can you maybe
33:00 - 33:30 bring it down in some terms that may be simpler terms for me because I I want to let you know that I understand you but you know sometimes it's hard for families to say I don't understand what you're telling me but you know we don't want to feel stupid and um that's the importance of building that partnership is where you can really get families to open up and feel comfortable to say when they don't really understand what you're explaining to them um and other things so the role of the family members in this whole partnership is you know like I mentioned previously um they are the
33:30 - 34:00 constants in the life of their child they're the expert in their child's individual strengths um the child's needs they I think most parents have a realistic outlook on what their children can and cannot do what Their needs may or may not be and also you know um they are The Visionaries who see that big picture and long-term goals whether you know it's your 5-year-old you may not want to think about you know what what they're going to be doing at 18 it may
34:00 - 34:30 be too hard to think that long term but you know we like to see um be able to see that they're going to have you know a place in life where they can um be a productive member of society where they can have friends where they can Thrive where you know they're accepted for who they are and I I think you know that's really important when you're looking at a child and taking care of a child you know providing therapy Etc that you see that whole picture um because for
34:30 - 35:00 instance I had um someone share with me that you know her son she wanted her son included in all the general classes and it wasn't she's like he's not going to come out learning algebra he's not I I know he's I don't need him in there to get math he's not going to get that that's not where his strength is but I need him to learn the social skills and I think those children in there they need to learn how to live with him just as much as needs to learn to live with other children who are his
35:00 - 35:30 peers and so I think that's you know a really important um thing to think about and think things for maybe you to think about when you are working with families you know so you know if you have a child that maybe is UN verbal but the parents still wants them where they want them you know the child's getting so much more out of it and sometimes we just need to see outside of that box to what other things can they get from it what other things other the people in you know whether it's going into a
35:30 - 36:00 mainstream class with another child you know I think it's something that we all need to learn to really um understand each other and live in society together as they become adults and I'm not going to get into culture too much um Dr M Perkins did an amazing job last um was it this last week at our face Toof face two we weeks ago um I I really I've been to a lot of
36:00 - 36:30 different cultural competency presentations and I really enjoyed the way she presented it um but I just a couple things to think of and when we're talking about culture really think about culture and how that impacts you know delivery of family centered care how that impacts when you're working with families and so this definition we found it's a a culture is a body of learned beliefs Traditions principles and guides for
36:30 - 37:00 behavior that are shared among members of a particular group so you know sometimes people think oh culture you know it's so big but really it's not we all have our own culture you know even if we were uh born and raised in the same town and lived on the same Black Block right next to each other you know we still have different culture within our own families different Traditions you know different ways we may think about things um very different experiences even though we live right next to each other so when we're
37:00 - 37:30 thinking about it in that way um and thinking about what the families that you work with you know it's really like Denise said you know last week or two weeks ago um really trying to open your mindset to what is the beliefs what are those family's values because um the things that the family values are going to be the things that they really hold high and also a great way for you to maybe get an in to um you know get them to um do the whatever the therapy or
37:30 - 38:00 some kind of you know some way to work with their child even better and have better outcomes for their child and so we do know you know our family's culture effects like I mentioned earlier you know they may not feel comfortable asking the provider can you re explain to me what you said I don't understand what you said I you may have a family that English is not their first language maybe they know very little English whatsoever but that
38:00 - 38:30 family may not feel comfortable asking you to re-explain it they so we need to think about these things and how can we what can we do to assure that um we meet families where their needs are um that maybe if we understand that English is not a first language that we offer information in the language that is their native language um and can any of you share maybe some examples of families that you've worked with um in a way that the family's culture impacts
38:30 - 39:00 the way that either they ask for support who they ask for support type of support they need or how the support is delivered okay so I've had experience working with a family with um an Asian culture background um the parents spoke English pretty well but there were still a lot of terms that I utilize as well as other providers um that were very difficult so um mom is very proud of her English though and is kind of intimidated with the fact of a translator so that involved a lot of um
39:00 - 39:30 discussion and where that's appropriate and where it's really not needed um as well as a lot of cultural barriers just into maybe sleeping habits where the best habit would be for the child to be sleeping on his own but Mom culturally really wants everyone in the same room in the same area um so those are just a couple of the things but it's something we're always considering Wonder um a wonderful example so can you share
39:30 - 40:00 with us how did you navigate that how did you navigate the co- sleeping or the sleeping in the same room and how how did you guys go about navigating that so it worked out in the interest of you know the family and the child um so it really helped in our prioritization of what skills we worked on so for this child in particular um it's a lot of barriers so instead of working on sleeping right away uh we focused on things like toothbrushing and hygiene um and then for sleeping we just
40:00 - 40:30 gave um Mom some tips about when he does wake up and things that we can do and we spoke with her like about a future if she feels as he gets older if we can move to a different uh type of situation and we're also in the process of trying to locate some um local organizations that might be able to help us better understand their culture because at this point we just feel like we might also not be as informed as we'd hope to be wow I I really commend you and the
40:30 - 41:00 organization that you work for because that that is really dedication to families that you are doing that and if you have any issues finding any organizations you know feel free to call me through the family center I can if I do not know of them I probably know somebody who does um and that we could you with if you're in need of those resources but yeah that that is wonderful and we have to work like you said start at you know maybe we don't touch the big stuff we start out small
41:00 - 41:30 and while we're starting at small we're working on building that trust between that family and the providers right yes definitely thank you but you know you're working on building that trust because they are from a different you know a different culture different language and um they're trying to like you said you're trying not to make them feel bad if they're not understanding you because it's nothing to feel bad about um because they've learned so much in English but I I think that's a really good example okay we can move on um just
41:30 - 42:00 something really good for you guys to think about and um a really good example that was shared in thinking outside of the box and really trying to hone in on better ways to um get support and buy in from the family by understanding their culture better so when we think about you know cultural competency and um you know how does that relate to being family centered well I think you we were just given an excellent example I I
42:00 - 42:30 don't think I could come up with one better that we were just that were given one second that Alyssa just gave um right there is a perfect example um and it is like Dr White Perkins stated you know it is an ongoing process we have to really be able to understand people who are may be incredibly different you know opposite ends of the spectrum of ourselves and um it just something that is a continual process of learning of building that awareness of um looking
42:30 - 43:00 inside and self-reflecting on any of the implicit bias that you may have that like we talked about last week um we don't even know where this may have come from who knows I mean it's just the way that our as we you know start from a young child and grow and our brain builds with all these um all the information that we've been kind of been thrown at us um but is in an ongoing process to constantly um gain more information
43:00 - 43:30 and you know I think you kind of go backwards and kind of go forwards but it's something to really continue moving forward with and I really um appreciate that everyone you know in here is really open to moving along that Continuum and um it's so incredible of you to be seeking out organizations that are going to help you understand a family's culture um and ways to help them um instead of keeping them from being able to move forward as
43:30 - 44:00 well so the best practice is we know that you know um engaging in that cultural humility so it's not just knowing the things that we know about the family but respecting the things that they value right so we can know that maybe they all sleep in one room and we can know that maybe we not okay with it we may never do that but there's still a difference between knowing and uh but then actually respecting that that
44:00 - 44:30 is that is that family's value that's your culture and you know being very respectful that because we don't want people to you know knock down anything things that we may find completely normal and I I can't think of one thing off the top of my head right now of course but um that may be completely normal within our cultural values that other people may just shake their heads at but um so it really is about not just knowing you know really respecting um letting families Define
44:30 - 45:00 the priorities and I think that you know that example that was given before like you said that's great that was their that family's culture they all slept in one room so they kind and you put that on the back burner and respected that family's culture on that I think um really being aware of any personal behavior that might be considered insensitive and and something you know I um I thought thought when I first came here at the family center I I thought I
45:00 - 45:30 had a lot of great skills and I thought I knew a lot of information about people from other races and I really learned over these last seven years that I really didn't know that much and um I know a lot more now than I did seven years ago but seven years from now I hope to know even a lot more um so it isn't a passive skill but an active one you know where we can self-reflect and look inside and really um be open to other experiences and I think when we can all become very open and honest and
45:30 - 46:00 respectful at the same way then we're going to be a much better world alog together so moving on to um a darker topic um on talk about grief and you know when we talk about grief right now um and working with families we know that grief isn't just mourning the loss of a child um but in h having a child with special Health Care needs or
46:00 - 46:30 special needs or genetic condition um you know families go through that grief of when they realize they first get that diagnosis and depending on you know families that you'll be working with you know you've got kind of a big spectrum because you're going to be working with families who have children with autism spectrum disorder other neurodevelopmental disabilities so maybe disabilities that were not diagnosed at Birth or prenatally whereas you know if you look at you you know then developmental disabilities in children with Down Syndrome a lot of families are
46:30 - 47:00 getting prenatal diagnosis this um nowadays um I had one and that was 12 years ago but nowadays I think the new prenatal testing for Down syndrome I believe you can find out a pretty accurate um 99 I'm pretty sure it's fairly accurate at like six weeks right now excuse me and um so we have to understand the stages of grief for families um and just know that you know there are
47:00 - 47:30 many stages um it is a normal healthy reaction to a significant loss while um you know we grieve for the child that we thought we were going to have I know um when I was pregnant I did receive a prenatal diagnosis I was excited I found out I was having a little girl and of course I'd had a son by then and um I was really excited in my head I had all these hopes and dreams and you know she was going to be a student she was going to be a dancer she was going to do all these great things and you know then I
47:30 - 48:00 received that diagnosis and I just I was crushed I I literally I sat in my bed and cried for three days straight or in front of the computer Googling I did a lot of Googling as well and um but you know uh that's a normal reaction to grieving for the child I thought I was going to have and learning to you know accept and find Hope for the child that I did have um so sometimes you know dealing in you know and you don't know where you may catch parents
48:00 - 48:30 at in this grief process and um you I think also too having a child a prenatal diagnosis or even at Birth diagnosis of a child with a genetic condition is probably different than parents who have had a child who is developing typically and then all of a sudden at some age starts regressing and losing skills and I I did not have that experience I cannot imagine but have a very good friend you know a lot of very good friends who have had that experience and
48:30 - 49:00 you know when we talk and we discuss like our grief or you know how we were impacted and I'm like oh that's right because your child was speaking your child was walking and then all of a sudden and I can't imagine that because you know Lily was just born with 47 chromosomes and she always was like that so I didn't have to um have I I I don't even I not really I guess any word call that but it was just a different type of grief but I get my whole point is that
49:00 - 49:30 you there isn't any right way to grieve um the grief is like they show here the Tangled ball of emotions and this is pretty much it and you know it could be um that you're working with families and you may not have any clue that maybe it's an anniversary of something special or dat an anniversary of a diagnosis um maybe all of a sudden you know have a parent and tears are lashing out at you and you have no idea what you did um don't take it personally it may have
49:30 - 50:00 happened um already you may have dealt with families and um all of a sudden maybe they've reacted in a way that didn't quite think was maybe appropriate for the time but I always like to say don't take it personally we don't know what may be going on inside or you know like this changle ball of emotions um you can be I think going fine and where you think you've accepted a lot and then maybe you're sitting in the doctor's office getting a new diagnosis um and then all of a sudden it feels like that your whole world is crashing down again I I think I I had a
50:00 - 50:30 lot of um sadness not so much that Li had Down syndrome but I felt really sad for her that she would have to go through whatever she may have to go through um and I was really hurt I I felt neck guilty so much that I caused it but I just I hurt for her literally like I loved her more than anything I I I didn't it didn't so much matter to me that I just really hurt for her and I
50:30 - 51:00 grieved I guess for the loss of her but you know she's always been Lily she doesn't know that she has you know missed out on anything and um we I think ultimately um Miss parents would feel that you know it's been one of the greatest things that's happened in their life I I would hope besides all the medical things but and just know that gep isn't always linear um and two parents can be at different stages um you know when you have a married couple or Partners or however that
51:00 - 51:30 partnership may look we have to realize um people grieve differently um men and women grieve differently you know I've had friends who they seem to get on the ball and acceptance pretty early on and husbands went on for a couple years still really struggling um but we have to remember there's a wrong or right way to grief and that it can reoccur at any time there could be triggers um birthdays date of diagnosis at beginning of a school year school
51:30 - 52:00 challenges um anytime a child is reevaluated anniversaries um and watching other children of the same age do things your child can't do I know um for me personally um just a couple years ago they have a little fear into it every year and all of a sudden I noticed my daughter's friends were there and they were in groups with three or four without parents I'm sure their parents were there somewhere but it made me really sad because Lily was there with
52:00 - 52:30 me and she couldn't experience what that was going to be like I couldn't just let her say okay I'll see you later because well who only knows where she'd end up at probably ordering pizza at hungry hi but I don't know you know you just it's not something that she didn't have that level of Independence to do that and that triggered grief for me so just remember that you know everyone experiences stages of grief differently um uh due to you know people want to talk about it don't want to talk about it depending on the
52:30 - 53:00 diagnosis but I think it all comes down to that everyone wants to have their feelings validated we all want someone else to say you know um it's okay that you feel that way you know you feel that way as long as you need to I have quite a few friends who've lost children and sometimes the things that are said to them not necessarily by professionals but by other people are just kind of horrifying to me um so you know but I I think just
53:00 - 53:30 validating feelings and listening and being there um you know lives aren't comparable just because someone has a one child doesn't mean um that the loss of their other child is okay because they have another one um and I said a lot of different things that families hear and um it's just you know it doesn't it doesn't help them at all it doesn't help them um except maybe making them angrier but you know just remember it's a
53:30 - 54:00 process that we all must work through individually at our own pace and unless you really feel that a family you're working with is just maybe really getting um undergoing more like a clinic pression then know that you know this is a process that will probably be with them throughout their child's Lifetime and you know through adulthood especially with the developmental disabilities there's so much to think about long term they can't just you know all right you're done with high scho you're going to college see later on your own um there's a lifetime of
54:00 - 54:30 planning a lifetime of um making arrangements for when you're no longer around to care for them um and just a lot of things that are really difficult to think about sometimes and so how can you support um the needs of the families that you serve I I think um one of the biggest things that we've spoken a lot are families need resources is uh they don't know where to turn to you know they've maybe been given a diagnosis and
54:30 - 55:00 they don't know what's out there they don't know what what is out there that maybe can help their famili so so you say you know current resources um make sure they've embedded make sure they you know they've either somehow been beded called or other families have used these resources and any community- based resources that families can go to I know generally especially in the beginning of getting um a new diagnosis or your child being diagnosed parents want to be
55:00 - 55:30 connected to other parents they want to connect with other people who have a child with autism who have a child with Down Syndrome who have a child with rep syndrome they want to know what is it like I want to connect with somebody because when you're first thrust into that world you feel like you are in a world that nobody else has a clue about you feel like you're almost just you know just like you feel like nobody could possibly understand what you're going through and I know for me I early
55:30 - 56:00 on found a online support group for families all over the country and actually outside of the US who had children with Down Center and I actually I'm still friends with these people I've met a lot of them in person and like I said they're all over the United States some in Canada we have one in Israel as well and we are still very tightly connected over 12 years later and um I I don't think I could have made it through those first year or two without the
56:00 - 56:30 support of other families and I think just for me when I met these families it was I couldn't for one I couldn't believe the amount of you know outpouring and encouragement for me support for me and telling me you know everything's going to be okay you know once you have that baby in your arms you're going to you know still the same baby you always had you just have a diagnosis now and you know I had people send me cards I had people send me books I just it was the first time I think in
56:30 - 57:00 my whole entire life that I ever met a group of people that just poured their hearts out to me and really just opened their arms and accepted me and it was one place I always knew I could go that no matter what I said they got it you know even though I had you know very close with my sister um and my son and my niece who were all very great support for me during my pregnancy it didn't matter I mean even still today I I can't share things with them but
57:00 - 57:30 they won't get it like somebody who lives a day-to-day life so um there are many organizations that can help with peer-to-peer support you know Family Center where we work um we connect families with other parents who have been trained and but there are also a lot of people like online support groups excuse me and um but there's a slew of all kinds of support and I think one of the biggest things that families need right away is support from other
57:30 - 58:00 families um they need accurate disease specific resources they want honest information they want you to you know um share with them what can they expect as to whatever you know least to the best of your knowledge and than any other Bas evidence-based programs um but also remember they may need to be connected to um Community Mental Health within their area but whether it's they're connected through a care coordinator in their medical home or somebody through their health insurance but finding a way
58:00 - 58:30 for these family to um get to the resources that they need or get to somebody who can ask those pointed questions because many times especially in the beginning families don't know what they need I mean we hear that a lot to our family phone line here where I work and they'll come get me and they'll be like I don't know I don't know that she knows what she needs but I can tell they need something so you know and I'll take the call and we just kind of ask some great you know pointed questions see where they're at and really help
58:30 - 59:00 navigate them and point them to things that can really help support them and a lot of times especially now fathers are more involved than ever and there are a lot of great programs out there for dads as well and so it's not just the mom that wants the support any longer these are some of the things um in the years that I've done different trainings and that we have kind of come up with what families want providers to
59:00 - 59:30 know trust my instinct we you know parents usually have that really good maternal that mother instinct and we just usually generally pretty much write on so really trust that instinct of the parent is coming in saying you know something's just not right this I can tell you something's not right you know listen um remember the child at the child first um try to use proper and respectful terminology remember that each parent processes evaluation information differently for
59:30 - 60:00 instance I'm always one I I like to know everything so anytime I get an evaluation anytime especially in the beginning when they do the evaluations to tell me where my daughter was that developmentally um I wanted that and I led looking at them I have plenty of friends that will take that they will not look at it and they will file it away and so don't get offended if that happens that's nothing personal to you I have a lot of friends who do not want to
60:00 - 60:30 look at that because they don't really think that that really it you know because not because that's not maybe where their child is developmentally um but just they don't really think that that expresses their child as a whole child as they see them and um some parents can't look at that for the reasons of it's too hard for them to say oh my child's five but maybe developmentally their one it's it's it can be difficult it can be difficult
60:30 - 61:00 when maybe their oldest child is a child with uh developmental disability and now they have another child that all of a sudden is barreling right over all any Milestones their first child's already had and so you know you have to think of even that grief aspect in other siblings that they may have when they have a child that's younger but now is able to do more than their child with a disability that can be really hard on parents having to watch
61:00 - 61:30 that also um we discussed um a little bit about people and person first language please try to always use people and person first language um there is we do know and especially just seem to be in the world of autism where a lot of self- Advocates who have autism are they want to be called an Autism I mean AIS they're called calling themselves aspies in this other language and um so that is very
61:30 - 62:00 different from the Down Syndrome world that we really want say a child with Down Syndrome um so you know we can't always know what to say we can't always you know get everything right and I think parents are forgiving and um you know a lot of parents put a lot of emphasis on that um but they're also a lot of parents will at least you know try to educate other people um so as to the best of your ability um try to be conscientious of using person first
62:00 - 62:30 language um sometimes office Personnel can be a barrier so um H sometimes it's easier for us to call and make referral appointments as opposed to um maybe a care coordinator making that appointment then calling us with a date and a time and we're like oh I have a meeting at work I can't make it that day and so sometimes it might be better that the families do make those appointments and that way they can at least you know a time that they know will be a good time for them and not least you know the
62:30 - 63:00 office staff time their time and everyone's time um but families really appreciate the time that you spend with them explaining complicated issues listening to them hearing their concerns validating you know their uh the that their concerns and the um wor that they may have um also validating that you do see the good things they see in their child and validating their strengths because you know we try to go
63:00 - 63:30 from the strength based and we can really validate that would really empower the family to um you know really appreciate that and then see themselves oh I can be an equal member of this team you know we can be partners and we can discuss these hard questions and these hard um choices that we may have to make but we can discuss them and we can negotiate we can you know really compromise if we have to but still they feel that they're being heard and they're being looked at from the
63:30 - 64:00 strengths that they do have and then ultimately you know families want to know that we really need your help I I want to I I'm so thankful for all of the incredible medical educational people that are in my daughter's life you know we have you know not just medical we have a whole Fu of educational people between her special education teacher occupational therapy Physical Therapy still um have hearing impaired Specialists that come I
64:00 - 64:30 mean a huge amount of um relationships that we have to navigate and I appreciate everyone and all of their input that they give to us and I think most families feel that way as well and this is actually my daughter Lily um she's much taller now this is probably five six years ago but um you know each person is unique like this little poster says um just moved you
64:30 - 65:00 know we all have our own strengths abilities and um our strength abilities and I can't read it now um but you get my drift oh you go back oh there we go um we all have like everyone people down syndrome achieve um many strengths talents and successes so just like no two people are the same there's no two children with Down Syndrome that are the same just like there's no two children with autism
65:00 - 65:30 or any other we all have our own unique strengths and I think families appreciate it most when people see that um I know in the down Center world we hear a lot oh that child is they're so happy oh they're so loving and happy and I'm like I don't know who they're talking about because that's not the child I got I got sassy and who do you think you're talking to but not you know I want to love everyone in the world that wasn't my child
65:30 - 66:00 but and this is actually my son Dustin and Lily and these were some of um we were holding a sibling conference last year and I was trying to get my son to come and be on the sibling panel which he said oh absolutely not that's what you do I do not do that and um but anyway so these are a few of the thoughts that he gave me about his sister Lily and I remember when I first told him after getting my prenatal diagnosis he was like oh okay that's a big deal we have kids at school that have Down syndrome and I was in tears
66:00 - 66:30 and this big you know mushy mess and like oh no it's no big deal at all mom and um because she was very very sick when she was born um which we knew um but he was there at the hospital and um we end up having uh emergency csection while we were while I was in being induced it was supposed to be a regular vaginal delivery we end up having to have an emergency c section and so um he actually saw her before I
66:30 - 67:00 did and she had tubes and she was on a vent and she had needles and tubes every everywhere um and as he said it was really hard to see her in the nipo he was really really scared months later L had open heart surgery and I could not and he was driving at the time so he was 17 actually when she was born and I was really upset and devastated cuz he would not come down to the hospital to see her and once we talked about and had this conversation
67:00 - 67:30 last year he told me it was so hard for him and that was why he did not come to the hospital after her heart surgery and here I'm thinking oh he's just a 17-year-old you know being all about you know self-centered and it's all about me right now but um little did I know that it had really really really um kind of stuck in his mind um and he said he was really worried she was before her heart surgery um she had went into congestive heart failure and um yeah she would just
67:30 - 68:00 be sitting in her crib sweating sweating like doing nothing at all and she would just be sweating and like you said oh she's smarter than I ever imagined she would be he knows uh she will that girl is she's real good at manipulating as well uh just yesterday I was getting reports from school so I can see on top of what she's doing in school and um in the note it said Mr theen gave everyone social stuff these packets Lily took hers and put it in the recycle bin and told him I don't want it like oh
68:00 - 68:30 lovely that's my daughter yep I don't need it I'm me great and anyway it was kind of a Priceless moment last night when we discussed this and I pulled a copy of it out of my uh work bag and she wasn't real thrilled needless to say but um he loves her and Lily loves Dustin he lives Jan Wayne County we're Lancing we don't get to see him often enough but um they adore each other and I think the Bond of siblings is great you know um no
68:30 - 69:00 matter what but it's a really wonderful relationship um so mainly you know Family Center Care is really professional is respecting what the family brings to the table fames respecting that education and expertise that all of you bring and really building that mutual respect between all people can really help um make the outcomes you know go really well we that's what we're trying to do is have great health
69:00 - 69:30 outcomes so just a few things to remember is words can create barriers use person first language um learn as much as you can about if there's a child and you know you're going to be seeing them um and it's something you don't know very much about you know if you have the time to get some current information um I I think that's always good avoid using stereotype um outdated myth like I said oh those kids with Down Center and we're all so happy and loving
69:30 - 70:00 um don't prejudge don't um just think one of where um one of the examples in my mind is I had a physical therapist at school at her IP tell me well they would no longer be working on um skipping and hopping on one foot because Lily had not met it at and it says by her evidence based research said that if a child does not meet this by the age of six they will never do this and L was eight at
70:00 - 70:30 the time and I asked her I'm like well I'd like to see this research I said because um I I'm like is that research on typical children on children with Down syndrome and she said no actually it's research for you know all children um and I think she said they give the children with Down Syndrome up to the age of five where a typical child was five or vice versa and just what I said well I'm concerned that you tell other families this and I'd like for you to
70:30 - 71:00 maybe think outside of what that data tells you because I have to believe in all the research I've done on down syndrome is that people with Down Syndrome continue to learn and so maybe she's not getting it now but I have to believe that if we work on skipping or hopping on one foot maybe not hopping on one foot Will's got really low tone and she's overweight so I said but I have to believe if I worked on this with her every every single day one time within the next 10 years she's going to get that and so I just want all of you to
71:00 - 71:30 know this was like four years ago well Lily just showed me the other day in the apartment that we live in she can hop on one foot and I'm going to take a video tape and I'm going to send it back to this physical therapist but that th those are the things I'm talking don't prejudge believe that things are possible you know she might go tell other fam say maybe they'll give up and it was it's not so important to me that Lily skips or hops on one foot but I just want people to be open to saying well we're just not going to do that anymore because if they didn't get it
71:30 - 72:00 now they're never going to get it um don't Place limits that kind of goes along with the example I just gave you know validate parent family concerns it's okay to say I don't know I think um you know you see a lot of children um children who maybe have a lot of conditions that not many people know enough about and um I parents and families respect that when you say I don't know know um and it it's okay that you don't know we don't expect all
72:00 - 72:30 providers to have all the answers to know everything and then um most importantly just believe anything that's possible and so um here's my contact information if there's oh you know what I apologize I think I missed an L in my email it's Huckleberry L at michigan.gov and that's my direct line so now um I can open it up for questions if anybody has any questions or
72:30 - 73:00 comments um just going back to you were talking about uh support groups for parents um and I recall some years ago we had started a support group uh well not so much a support group but more um a group for dads uh for part of uh the uh Detroit 360 project that the Michigan DDI had uh several years ago um and I was wondering if you could comment a little more on that as well because you mentioned that um the the
73:00 - 73:30 groups for dads are growing out there and I and I noticed that and this was probably about seven or eight years ago and we we did have uh quite a few fathers that were interested in these resources but didn't know how to connect to them right now is that is that still is that still going on now or did that end up fizzling out Mike no no I think uh that the funding for that project ended some years ago but I'm just remembering how how popular that that
73:30 - 74:00 father's group uh did become through the course of that project oh yes absolutely now I so for instance um where I live we don't there are quite a few down CM associations in the state of Michigan um here in Lancing we don't have one of the bigger ones but they're working on a lot of things but one of the things they do um so sometimes it may be through like a Down Syndrome Association or another Association specific disease specific you we do have they have Dad's nights out they get the dads to meet up um Scott Newport who is
74:00 - 74:30 um a friend as well as someone I've worked with and some of you may know as well um he was on the care coordination video we talked about but he um is on the patient and Family Center advisory committee through U ofm and he does training at U ofm for providers um and also he um supports St throughout the state of Michigan um who have a child that is terminal or has lost a child
74:30 - 75:00 because he his son Evan um unfortunately passed away so I know he has a lot of connections I believe they also I believe it's in Livingston County had a dad's conference once a year that's very cool and so but but one of the things that we do here at the family center where I work we help people connect to resources whatever that may be so if anybody is the need um of where are these support groups at um are they in my County they're not in my
75:00 - 75:30 community what can we do to get them started I could certainly help um PE and I can certainly help get that information for you um but one of the things that we also can do through the family center is connect um parents to other peer mentors so we do have dads that attend a parent Mentor training so we do have dads who've been trained as a parent Mentor so if there are dad dads out there that would like to connect with another dad they can contact our family center and um through a brief
75:30 - 76:00 intake on the phone we can connect them with another dad now we do that with moms as well and siblings um if we try and help with finding sibling support groups or uh SI shops within the local community great well thank you everyone and I very much appreciate having your time tonight and look forward to speaking with you all again