Presidential Address 2024-Achieving Health Outcomes Across the Lifespan.

03Original abstract

It is my great honor and privilege to speak with all of you today to help open the 148th annual meeting of the American Association on Intellectual and Developmental Disabilities (AAIDD) and welcome you to this great city of Louisville. I would like to thank members of the Planning Committee, the Local Arrangements Committee, Dr. Maggie Nygren, and the superior AAIDD staff who have worked tirelessly over the course of the last year to ensure an engaging, interactive, and interesting conference where we can all learn from each other, network, and leave feeling inspired about the work that we do. Please take this time away from your daily jobs to immerse yourself, reconnect with old friends and colleagues, and meet new ones.I may not be able to rap like Dr. Liz Perkins, cite research like Dr. Karrie Shogren, or author and edit books like Dr. Mike Wehmeyer, but what I do know well is how to support the community health care needs of individuals with intellectual and developmental disabilities (IDD) and/or autism. For almost 30 years now, this has been my role in Southeast Pennsylvania, just completing my 25th year at my current organization, Philadelphia Coordinated Health Care (PCHC), which is also known as the Southeast Region Health Care Quality Unit.As I reflected on my work related to this year’s conference theme, Achieving Health Outcomes Across the Lifespan, I realized that we haven’t hosted an annual meeting with a healthcare focus since 2017, which also means since pre-COVID. So, as much as we feel like things are relatively back-to-normal now, I would be remiss if I did not mention how access to healthcare has changed in general and for the IDD population since that time. I recently read an article that indicated that this generation would all remember where we were on Friday, March 13, 2020 when the world stopped due to COVID. I’m sure if you all take a minute, you can remember exactly where you were or exactly what you were doing in the days leading up to it. That day is now monumental and etched in our brains like the day some of us heard that John F. Kennedy was assassinated or the space shuttle Challenger exploded. For me, I was hastily trying to complete the work-from-home approval forms that my staff would need to telecommute for the “2 weeks” COVID was supposed to last. Little did we know then that it would last much longer.Living and working in Pennsylvania’s Southeast Region, with Philadelphia as our lead county, one would think that we had lots of resources and support at our fingertips. After all, we have the Jefferson Health System, Pennsylvania Hospital, and the University of Pennsylvania and Temple Hospitals all within close proximity. Well, nothing was further from the truth, especially for folks with intellectual and developmental disabilities. The calls and emails started fast and furious that very first evening from provider agencies trying to navigate the crisis with the following questions: How do we get personal protective equipment? How do we teach staff about COVID? Where do we get resources and support? What do we do if individuals and/or staff became infected? How do we get medications? For the community provider world, this was your worst nightmare—it was New Year’s Eve, Mother’s Day, and a massive snowstorm all rolled into one, and it wasn’t going away.In fact, it was worse in our region because we were so densely populated, much more than our other counterparts around the state. I remember being on a program director’s call in which the others only reported a few COVID cases each. I was quiet on the call and spoke last. I reported the triage work that my community nurses were handling while participating in at least two to three provider calls a day. Our nurses completed approximately 135 community provider engagement calls during the first year of COVID.I liken it to feeling like the old TV show MASH. The other health care quality units around Pennsylvania could not comprehend what we were experiencing in the Southeast Region. Even though we were working remotely, we still felt the pressure and responsibility of being a resource and providing answers to the teams of staff and individuals that were alone working in the community. This was all new to everyone. How was the system supposed to provide access to quality healthcare in the community during a pandemic?But the Southeast Region of Pennsylvania did what we do best—we rallied together and faced COVID like Rocky running up the Philadelphia Museum of Art steps. We were in Philadelphia after all. Community nurses, provider agency staff, supports coordinators, county administrators, and even regional state staff ensured that individuals with IDD were safe, had adequate staffing, could get their medications, and could access COVID vaccination shots and boosters as needed. They did all this work while telecommuting, I might add. But then, as COVID lingered, it impacted routine medical appointments and quality of life issues for the folks we supported, which we all learned to endure as “the new normal,” and changed the service delivery system for everyone.I think we can all agree that one of the most positive changes to come out of the COVID experience in regard to access to healthcare for people with IDD is the increased use of telehealth and the continuity of care it brought for the folks that we support in the community or at home with families. Suddenly, managed care, health insurance, and medical practitioners were finding a way to use telehealth with our population. Community providers, families, and direct support professionals (DSPs) began supporting individuals to use it. It became a necessity for healthcare maintenance and preventative care access. With telehealth, individuals with IDD could continue a much-needed medication regimen, receive a quick COVID test, confirm a diagnosis, or simply ask a question or try to alleviate a pain issue. Zoom, or your favorite virtual platform, was your new best friend and used as an alternative form of communication for many health assessments, team meetings, or reviews. And, finally, the field was forced to transition to electronic health records and electronic forms to comply with the requirements of many funding entities, which also eased some administrative burdens.I can remember when our organization had to pivot from hosting integrated heath clinical reviews (IHCRs) from in-person to Zoom. The IHCR is a team approach in which physical health concerns are evaluated by a community nurse before a behavioral health team makes an assessment. In some situations, a psychiatrist will conduct a medication review and attend the team meeting to provide their recommendations. It’s a lengthy process that involves a lot of support members from the person’s team. We quickly realized that it was much easier on the whole team, especially for the individual, to meet virtually via Zoom. Let’s face it, no one wants to drive into center city Philadelphia and navigate traffic and parking. But, most importantly, it was much less stressful for the individuals themselves and we could easily accommodate many more people’s schedules virtually than in-person. Once we switched to Zoom, we have not gone back to providing in-person IHCRs and we have actually increased the number of these types of clinical reviews we perform in a month and on a yearly basis since COVID. This provides an increased support to the individuals we support with a dual diagnosis in Southeast Pennsylvania.Some other positive outcomes to come out of COVID were an increase in online services and supports. People began to rely on the internet to provide healthcare online training, supports, and resources for individuals, families, and DSPs without ever having to leave the house. If necessity is the mother of invention, then COVID opened the doorway for more advanced and interactive virtual healthcare learning. Although online training existed before COVID, during COVID, it became the only means of education for DSPs that felt isolated while in homes with individuals who still needed ongoing education and information. YouTube and Pinterest provided creative ways for not only entertainment but also creative recreational, communication, and physical behavioral health ideas. Due to the increase and widened use of Zoom and telehealth, many states changed their policies to incorporate both platforms into their regulations and procedures.Although there were some positive things that affected healthcare access for folks with IDD during COVID, there remained some challenging issues as well. Unfortunately, there is still a lack of physicians who are willing to treat this population, especially in the areas of dental care and behavioral health. I can’t tell you how many calls I receive asking for a list of a larger number of dentists, psychiatrists, and behavior specialists that serve with people with IDD in our region, and we are in an urban city. But we all know what happens as soon as a new physician is found that treats individuals with IDD—we refer everyone to them rather than expecting all physicians to treat patients with IDD in their caseload. This is where physician education is vital!Dr. Rick Rader from the Orange Grove Center in Tennessee recently presented to the United Nations as part of Down Syndrome International’s 2024 World Down Syndrome Day Conference. In his presentation, he stated, “There are 1.4 million medical students in the world, attending 3,800 medical schools in 186 countries. Training to become a doctor, depending on the country and specialty can take from 8 to 15 years of intense education” (Rader, 2024). Rader indicated that, on average, a physician will see close to 40,000 patients in their lifetime and stressed three main points to include in physician education: how to be an advocate, examine negative bias towards disabilities, and to avoid diagnostic overshadowing (Rader, 2024). I think we can collectively agree that these points should be included in all education for both medical school students and practicing physicians.We do have some examples that are providing physician and student education about IDD. IntellectAbility has developed a curriculum for physicians, physician assistants, nurses, nurse practitioners, and other clinicians. The Curriculum in IDD Healthcare (IntellectAbility, n.d.) consists of 6 modules that teach practical skills that improve clinical competence in the provision of healthcare to people with IDD:IntellectAbility has already partnered with a few medical and nursing schools to train students using this curriculum. The curriculum is also being used to train practicing physicians to further their working knowledge and education.Besides IntellectAbility, the Nisonger Center University Center of Excellence in Developmental Disabilities (UCEDD) at The Ohio State University (OSU) has been collaborating with the OSU College of Medicine since 2017 to incorporate IDD into their medical school curriculum. Individuals with IDD are paid contributors in the healthcare training practicum. The program embeds people with IDD into each year of medical school through lectures, patient panels, and an intensive curriculum. People with IDD pretend to be patients and have 1:1 interviews with the students. This curriculum helps the students become more comfortable treating individuals with IDD and reduce their biases toward treating people with disabilities.Another innovative health access/education program has been initiated by Mr. David Ervin from Makom in the Washington D.C. metropolitan area. Makom hosted a health summit in May 2022 with self-advocates; local, regional, and national health policy experts; healthcare providers; and practitioners with experience delivering healthcare to people with IDD. The group met over 2 days to conceptualize a healthcare delivery system that provides comprehensive healthcare (including integrated dental care, mental and behavioral health, and specialty care) and wellness to people with IDD, design a national center of excellence in clinical training for health profession students and other practitioners in developmental medicine and dentistry, and develop a workplan to build such a system. The result of this summit is a blueprint for a healthcare collaborative clinic in which multiple stakeholders such as physicians, dentists and other health professionals, hospitals, academic medicine and dentistry, research institutions, and government can come together with a common purpose to identify gaps in healthcare for people with IDD and develop solutions to improve their care (Ervin et al., 2023a, 2023b; Ervin, 2024).So, I think it’s safe to say that we have some examples of successful models of physician education and medical school training even within this great state of Kentucky. The Lee Specialty Clinic led by Dr. Matt Holder is right here in Louisville. In fact, the last time we held the AAIDD annual conference here, the association’s Health and Wellness Interest Network toured the facility. The Lee Specialty Clinic provides a wide range of comprehensive and general healthcare services for the IDD population, including physical health, behavior health, therapies, crisis and It has up with nursing and dental schools the and the Specialty n.d.) to curriculum for and students. The Lee Specialty Clinic is that the generation of healthcare professionals are to care for patients with medical students and physicians, we also remember how it is to individuals themselves about their has developed and presented healthcare training and and resources on a of both physical and behavioral health are also many that themselves to personal in the including internet and of COVID. In Pennsylvania, we have a to individuals, staff, and on the and of a of that are known as the and health can result in and and all of the health care quality units in Pennsylvania have education on the a for the folks that we has also affected the nursing in this We to have a of developmental disabilities nurses or transition to other jobs the COVID crisis was the for nursing was so in hospitals, many nurses the community provider for and more This has in increased in that with being in other The Developmental Disabilities Association work to help nurses to our providing ongoing and the of their more work could be in nursing schools to provide an to IDD specialty and The Jefferson in Philadelphia recently partnered with the of Philadelphia of Health and Intellectual to provide nursing students with a education through their The is to provide nursing students with IDD and by provider community nurses while and working with physical and mental health all COVID have been and it like we are back to in our daily we are still not back of Pennsylvania and some provider agencies are not as open as were pre-COVID. I sure you are all well there is a massive of especially for the and supports This could be due to lack of knowledge of IDD, issues or just a of a The haven’t it out but we are still working by for the folks that we have a to and running up day like in this has their of how started working in this it’s a close like me, you of into it and our are together like a or a of supports and of the of an like AAIDD is having such a that us to ask each other for or our many include their if you would for a I would like to tell you and how it led to community healthcare for IDD and how I before you all with three of the provider home in the community in which The was in and the two were in their each with their The together was due to their and related State I was new to the system and a in the it was my responsibility to take these with a from a of Philadelphia to center city Philadelphia during in so that their medical records could be by I had no what I was I had no experience with alone What was the treat the I had no but here I That was also the year Pennsylvania’s IDD from a state to multiple managed care organization I was with which would best each and their care physicians, medical your training like and there wasn’t training about the internet was at the and we used or not I can remember being on the group to help transition the health and their care physicians to sure were included in their was no on the I held a of responsibility for the and health of with no I felt very and liken it to the feeling that I had when I had my first many years of with I had the support of friends and to a by the University of and The for the of DSPs is to years old et al., This range may but I spoke at with Mr. of about the and he to that, in of leave or so the is as the of that ever to was that the DSPs were and that that to over to think about that for a if the most DSPs are and DSPs are over all the healthcare training in the world will not to support the population of our This is so especially related to healthcare as our population How can we that members are to care for the of and in with IDD and of education and supports is needed as we to individuals to in and in their the 30 the in a worked and right the IDD population. due to medical medications, and more to their daily quality of individuals with IDD are than ever That means are the and as the general population, and we need staff, and to be to how IDD, and even this being I would not my experience for the It provided with a and of supporting individuals with in the community I have found since working at that I training to DSPs and my my and common of their and my knowledge this conference we are to have a by Dr. the of with Dr. Dr. and Dr. who will each of how their work helps to health outcomes for people with IDD. will health and the will the of health to the population, including bias and the need for physician will which and and community and the of individuals in The will Dr. who will show us how to health outcomes for people with IDD from health and provide us with some about this year’s theme, I was on the still to be learned from who at Even though the almost years in there are still ongoing and The in a the focus of of issues toward outcomes for members and the Quality became the blueprint or for Pennsylvania’s of Developmental and by developed a of for quality of life many of which with the of of health and are very in the person’s quality of life and is also has been able to their quality of life outcomes by but has also been able to their healthcare as last there are members in the Southeast Region of Pennsylvania and and the of the members is in the to The will continue the last is would like to your to a for my and a that has been by the The that our has been over the online of COVID have all a AAIDD is not out of the in to other national in fact, we are the We have to think of new and creative ways to new members to and their while our most and for students and one that out for the of supporting and the students and professionals within I remember Dr. as an in the like many of you one in his he began his I could to all of this one out for Although it is now years I think this still and is So, if he will to you to what I is a great of how to support and students and I can speak for the in how much we the and of the and is to the association’s We to your and time I have heard from members and read in many of the that a great of us feel that AAIDD is our Although I agree with you I also we are so much for me, that was during the of my I was so by the of support from current and colleagues, and members I like to call some of my friends from all over the of you or with and even I know many other national that support each other like we do. I Liz it best at the of are your AAIDD and we are here with and we are here for experience is only one of how and our AAIDD is and how it is both for all of us to and continue to our We all the of especially year when the reviews the annual conference one of the most we had to pivot and provide a virtual conference platform, the most and on the was the lack of and and I very with a virtual we towards in 2 it is our as members to ensure our for not only members to but to continue the work our has in support IDD for close to I my I would like to leave you with my to think about over the course of the conference and the of one be it a new a student or or a that you can and support within or them in a support a or just them to attend year’s conference in I can we are all here as members now at one time or us that and us to attend a a or an Interest I’m asking for all of us to continue that and it to help the of our and the great work it I’m to see what the for AAIDD and the creative services and supports we have to develop for this I would like to thank you for this and your to lead this I to as the of the for

Intellectual and developmental disabilities, 2024 · doi:10.1352/1934-9556-62.6.425