From Our Friends
We are happy to share news from our partner organizations because, as Helen Keller once said, “Alone we can do so little; Together we can do so much.”
Understanding the Hurt: Self-Injury Awareness in the IDD Community
Magenta Webb, BSN, RN (Community Based Nurse)
Self-Injury Awareness focuses on increasing understanding and reducing stigma around self-injury, also known as non-suicidal self-injury (NSSI).
Self-injury can occur across all populations, including individuals with intellectual and developmental disabilities (IDD), where it may be linked to communication challenges, sensory needs, emotional regulation difficulties, or trauma.
Self-injury in individuals with IDD is often a form of communication, not attention-seeking
Awareness Promotes trauma-informed, person-centered support
Emphasizes the need for early intervention and appropriate mental health services
Reminds caregivers and professionals that compassion and understanding improve outcomes
If you or someone you support is experiencing self-injurious behavior, please seek professional medical or mental health support immediately.
Learn more about Self Injury/Harm Awareness Day (SIAD)
Villodas, M. L. (2024). Suicidality and non-suicidal self-injury: A narrative review of measurement, risk, and disparities among minoritized and system-involved youth in the USA. Children, 11(4), 466.
Tom Golisano Invests $125 Million in Three Additional Children’s Hospitals, Expanding Golisano Children’s Alliance to 15 Members Nationwide
Tom Golisano today announced a $125 million investment in three children’s hospitals, which will be added to the Golisano Children’s Alliance nationwide network.
As part of the investment, Akron Children’s Hospital in Akron, Ohio, will receive $50 million, Dayton Children’s Hospital in Dayton, Ohio, will receive $40 million, and Avera Health in Sioux Falls, S.D., will receive $35 million.
This brings the total number of Golisano Children’s Alliance hospitals to 15 across the United States. The Alliance is a growing national network of children’s hospitals united by a shared commitment to improving pediatric healthcare delivery, advancing innovation, and ensuring children and families have access to high-quality, compassionate care close to home.
Each hospital will become an active member of the Golisano Children’s Alliance and will prominently recognize the Golisano name. Akron Children’s Hospital will name its Akron Campus “Akron Children's, Golisano Campus”; Dayton Children’s Hospital will name its main campus the “Golisano Comprehensive Care Campus”; and Avera Health will name its children’s hospital “Avera Golisano Children’s Hospital,” which will be in its new patient care tower set to open in 2027.
“All three hospitals provide outstanding care for the children in their communities, and we look forward to seeing what they can do with the added resources that being a member of the Golisano Children’s Alliance provides,” said Tom. “As a father and grandfather, nothing brings me greater joy than seeing how better access to healthcare improves the lives of children and their families. It is my plan to continue with this mission, and I look forward to working with more hospitals and building out the network further over the months and years to come.”
“We're excited to expand the Golisano Children’s Alliance once again,” said Erica Dayton, Executive Director for the Golisano Foundation. “Millions of children will have better access to state-of-the-art healthcare close to their homes thanks to these donations and the close collaboration and connection the alliance creates between hospitals that join the network.”
The Golisano Children’s Alliance was founded in October 2025 when Tom significantly expanded his support of children’s hospitals with a transformative philanthropic commitment totaling $403 million. Today’s announcement brings his total giving toward this initiative to $578 million.
Tom continues to actively build relationships with children’s hospitals across the country, with a long-term goal of expanding the Golisano Children’s Alliance to 40 hospitals over the next several years. More hospital partnerships are expected to be announced in the coming year.
Governor Hochul Announces 30 Awards Statewide
NY Govenor’s News
New York State ⎸ April 13, 2026 ⎸ Albany, NY
Governor Hochul Announces 30 Awards Statewide Totaling $25 Million to Expand Health Clinics and Improve Access to Healthcare Services for People With Developmental Disabilities
Governor Kathy Hochul today announced 30 awards with a $25 million investment to help address health equity for people with developmental disabilities who often find it difficult to find comprehensive healthcare that meets their needs. This critical statewide initiative was announced as part of Governor Hochul’s 2025 State of the State and enacted in the FY26 Budget. The New York State Office for People With Developmental Disabilities (OPWDD) prioritized awards based on projects related to expanding access to dental care, improving physical diagnostic space to better accommodate wheelchairs, creating sensory-friendly areas for neurodiverse patients, and improving access to specialty physical health services in ‘healthcare deserts.’
How Special Interests Help My Mental Health as an Autistic Adult
Cory Morrison
Autism Spectrum News ⎸ April 3, 2026
When people on the spectrum are vulnerable to society ostracizing them because of their autistic traits, unfortunately, in some cases, it means that their mental health can deteriorate, as well. Indeed, autistic people have two to 10 times higher rates of mental health conditions than neurotypicals, and that is incredibly concerning (Beck, 2024).
Autistic Adult Special Interest Playing Piano at Home
Where do I fall here? I’ve struggled a lot mentally in my life to the point where I’ve had days where I just lay down, do almost nothing and feel that everything is too hopeless no matter what I do and no matter how hard I try to improve. Workplace issues, friendship fallouts, social rejection, guilt over past mistakes and a general feeling of being behind others in life have greatly contributed to this kind of mental state that I’ve often had since my teens and still do sometimes experience. There’s, thankfully, a bigger fish to distract and override these mental health issues once I’ve had enough time to make sense of it all, and that is special interest
It’s important to be aware that special interests may not always work for every autistic person who struggles, as the spectrum is so broad to the point that you can’t say that too many things about the condition are universal (Chiang et. al, 2021).
Are Special Interests Linked to Improved Mental Health?
A special interests study indicates that while some neurotypical people may not understand why special interests are beneficial to autistic people, many autistics who participated in the study say they bring so many benefits (Long, 2025). In fact, the study says special interests can help autistic people not only improve their mental health but help them communicate with others better, which challenges a common assumption that autistic people having special interests always means that they are completely isolated in society focusing on them. One participant said, “Special interests are something that I’m motivated to do, even when I’m not motivated to do things. Like when I’m depressed, they give me a reason to get out of bed. … They give me structure and often in times where I feel very hopeless or overwhelmed, or stressed or burnt out,” while another said, “When you’re able to grasp on to a special interest, I think it’s a lot easier, mental-health wise, and ability-to-live wise.”
Building Online Friendships Through a Shared Interest in Weather
Going back to the early 2010s when I graduated from high school and started my first college program, although I did try to be more social after being nearly completely isolated in high school, I did have some rocky friendships. I had some academic difficulties in college plus friendship fallouts back in the 2011 to 2013 period, and by then, I didn’t have much going for me other than my special interest in weather. It all truly shook me. However, that interest, which started in 2006, I started to explore further by early 2014. I would read social media comments on a weather site, read weather blogs, read weather forums and track weather through models, and through these comments, I found online friends (many who I still have today) who not only share my weather interest but have the same kind of weather preferences that I have (generally warm, dry weather).
During the mid-to-late 2010s, with these new online friendships combined with meeting people at a warehouse/office job, a supermarket service clerk job and a college journalism program, my mental health took a dramatic rise from the complete isolation I once badly experienced just several years prior. Meeting those online friends through commenting on social media weather posts by chance was, admittedly, not the only contributor, but it played a big part. I wasn’t only finding great joy in my special interest, but I was able to find people who shared it with me.
Rediscovering My Love for Piano During the COVID-19 Pandemic
Despite a generally strong period in my life from 2014 to 2019, like with many people, the spring of 2020 was not fun for me, to say the least. It wasn’t even just the whole everything is closed down, and you can’t meet up with people thing, my mind took a spiral from spending so many days at home. I wasn’t only focused on the presence of the COVID-19 lockdown situation, but I kept cringing at old memories from my younger years (specifically high school) to the point I kept going on about them with my parents. It badly affected my mental health to the extent that I was fighting my thoughts and resting pretty much constantly.
Finally, on a hot summery day in late May 2020, my father came down to my room (my room was in the basement in the house I lived in from 2002 to 2025) to talk to me about everything I was feeling. He looked at my keyboard piano, noting that I’ve barely touched it in years (I was an avid piano player during my pre-teen and teen years but lost interest in it for reasons I won’t go on about here). Then, he looked at me and said, “You really need to start getting into piano again. You’re so good at it.” I took his advice to heart, and I started my own series on my Facebook and Instagram accounts where I post shortened piano covers of popular mainstream songs roughly twice a week. I haven’t given up on this series either, as I now have hundreds of covers from the past six years. All this new joy because the pandemic brought me to an exceptionally low point in my life. I acknowledge how common it was for people to reunite with long-lost hobbies or discover new passions during the pandemic, though, and I was fortunate to be a part of that crowd.
How Special Interests Impacted My Childhood
I had many conflicts with peers and adults that affected my mental health in some adverse ways during my childhood, but I can’t say these kinds of thoughts were as persistent as they were in my teen and adult years. Still, do special interests help temper any negative feelings? They almost always did because as an autistic child, special interests especially felt strong and rewarding (like a kid getting excited for Christmas). Even when adults in my life reminded me not to do the same things repeatedly, I didn’t want to move away from these interests. This is partially because I didn’t have the social wherewithal to understand why having extremely narrow interests can be socially difficult in the long run, especially if they weren’t things well-liked by children around my age.
On the other hand, during my preteen years, I was at a stage where I knew some of my interests in certain computer or video games deviated from what many of my peers liked. I still thoroughly enjoyed these interests, but whenever someone criticized me for liking them or being “stuck” on them, I would get extra sensitive (sometimes to the point of crying or distancing myself from them for days). At 10 and 11, there was one online game, in particular, that I was so into that I unintentionally annoyed almost everyone around me about it (despite some of my peers also playing it), and that combined with dealing with some rude people in that online community drove me to slowly stop playing the game.
From a distracting me from schoolwork struggles or social isolation struggles standpoint, these interests distracted me immensely during my childhood. However, it came with the cost of being bullied or shut down by people, and how I responded greatly depended on how socially aware I was at the time.
Understanding the Power of Special Interests on the Autistic Mind
The way my brain has processed special interests has been an eye-opener in a way that has helped me get through the worst storms of my life. If it weren’t for them and the support from some incredible people in my life, I probably would not have much motivation to do the kind of things I have been doing in the past and present. It’s evident that this is true for many other autistic people, too, and I fully accept that. Although I had some extremely difficult times, things sometimes must get worse before they get better, and that was evident with the online friends I made who have my shared weather interest, as well as my motivation to start my piano series.
Medical Students with ‘Invisible’ Disabilities Are Improving Patient Care
Bobbie Collins
Harvard Medical School⏐July 18, 2024
During her first year at Harvard Medical School, MD student Lilly Montesano Scheibe learned that troubling symptoms she had been experiencing were caused by narcolepsy with cataplexy, a neurological condition that causes overwhelming daytime sleepiness and sudden loss of muscle control.
The physician who made the diagnosis knew Montesano Scheibe was a medical student and told her she should look up the condition on the physician resource UpToDate. The doctor also commented that it would likely negatively affect Montesano Scheibe’s planned career.
The lack of information and treatment plan left Montesano Scheibe feeling scared and alone, and she was dismayed to have her future in medicine called into question.
Montesano Scheibe happened to know of a classmate with narcolepsy, Kelsey Biddle. When Montesano Scheibe reached out, Biddle counseled her on how to manage the condition, connect with the School’s Office of Disability Services, and advocate for herself.
“But it shouldn’t be luck” whether someone gets access to the resources they need, Montesano Scheibe said. “There should be a community at a medical school. There should be a system.”
And physicians, she added, should be able to empathize and connect meaningfully with patients with disabilities.
At HMS, Montesano Scheibe and Biddle have become part of a cadre of faculty, staff, and students working to improve MD training on caring for patients with disabilities and to create an environment where aspiring doctors with disabilities — including disabilities that aren’t immediately noticeable to others — are well supported.
These efforts could help to increase the number of doctors prepared to provide the best care possible for what the National Institutes of Health recognizes as the largest minority population in the country.
Training gaps
One in four Americans lives with a disability, but according to a recent study, only around half of medical schools provide any measure of disability education. Most of the instruction that is provided is limited to a single session or stands apart from the main curriculum, said Dorothy Tolchin, HMS instructor in physical medicine and rehabilitation, part-time, at Spaulding Rehabilitation Hospital and physician-investigator at the Mass General Research Institute.
This gap has contributed to disparities in the care of people with disabilities. The CDC reports, for example, that one-quarter of individuals with disabilities encounter barriers to health care access.
In addition to a lack of training, another obstacle is the attitude of some clinicians toward patients with disabilities. A 2021 survey of physicians revealed that only 40 percent felt confident in their ability to provide care to disabled people, and only 56 percent strongly agreed that they would welcome patients with disabilities into their practice.
Over the past five years, there has been increased movement to address these disparities. In 2022, the National Council on Disabilities published a policy brief on advancing health equity for people with disabilities, and in fall 2023, the NIH designated people with disabilities a health disparities population, which will provide funds for research to improve health outcomes.
In 2020, at HMS, Tolchin convened faculty and students to form the Disabilities in Medicine and Dentistry Working Group, which led to the development of a comprehensive curriculum on caring for patients with disabilities of all types. The School has now integrated disability coursework throughout its Pathways and Health Sciences and Technology MD programs.
The curriculum includes education about nonapparent or ‘invisible’ disabilities, which comprise an estimated 10 percent of all disabilities in the U.S. and can take the form of chronic illness, such as diabetes and immune disorders, or conditions that affect a person’s cognition, mental health, or development, such as impairment from an injury, depression and anxiety, or learning disabilities. The longitudinal curriculum is now entering its fifth year, with content across 10 courses and growing.
For example, the Harvard-MIT Program in Health Sciences and Technology (HST)’s Introduction to Clinical Medicine now includes a program in which every student spends time with a family who has a pediatric or adult child with an intellectual developmental disability. In Pathways, as students transition from classroom learning to the principal clinical experience, families, community advocates, and clinicians are brought in to provide perspective on navigating the health care system with a disability. During Pathways professional development course, students learn to identify and mitigate disability-related microaggressions.
“I’m proud of our disability curriculum for extending beyond what is typical at medical schools,” said Tolchin, who runs the curriculum as inaugural director of disability and anti-ableism education at HMS.
The benefits extend beyond patients with disabilities receiving care.
“It has become clear that when students learn about clinical care and inclusive learning environments for individuals with disabilities, they apply those lessons more broadly to the care they provide all patients and the learning environments that we create for everyone,” said Tolchin.
The HMS disability curriculum has been highlighted in a resource for medical schools working to develop their own disability-conscious curriculum.
Improving student support and physician representation
Along with the need for training is the need for more clinicians with disabilities.
Recent studies on a phenomenon known as concordance show that patients, particularly those from marginalized communities, are more satisfied with their care, more apt to follow their treatment plans, and have better health outcomes if they share aspects of their identities — such as ethnicity, gender, and language — with their doctors.
But the percentage of doctors with disabilities is far lower than in the general population, with just 3.1 percent of 6,000 doctors surveyed in 2021 responding that they have a disability. Only 4.6 percent of medical students surveyed in 2019 said they had disclosed a disability to their school, though that represents an increase from 2.7 percent in 2016.
Increasing those numbers could lead to more physicians who are competent in caring for patients with disabilities, but achieving greater representation requires that students with disabilities receive appropriate resources during medical school.
While the Harvard University Disability Resources office provides support for all students with disabilities at Harvard, medical and dental students have unique learning environments. The HMS Office of Disability Services ensures that these students have optimum learning conditions in the classroom and clinic by putting in place services such as testing accommodations, assistive technology, and help with daily activities. Tim Rogers was hired as director after students advocated for the position, said Tolchin. Tolchin and Rogers provide faculty development through the Office of Medical Education on teaching about disability as well as teaching disabled learners.
In 2020, students Jessica Laird and Andrew Chun, with Tolchin as faculty advisor, formed the affinity and ally group HMS Student Alliance for Chronic Illness, Health Conditions, and Disabilities (HACHD). Biddle and Montesano Scheibe are the group’s second generation of student leaders. The group matches interested medical students with residents and faculty with shared lived experience and offers a buddy system, “to take the luck out of finding peer-to-peer connection,” said Biddle.
HACHD also organizes advocacy sessions, such as a workshop on applying for and implementing accommodations, as well as relaxation, community building, and awareness events. HACHD activities are open to all students at HMS and the Harvard School of Dental Medicine.
Prospective students are taking note of the School’s efforts. One of the reasons first-year MD student Kiki Schmalfuss chose to attend HMS was the disability student group. Schmalfuss, who has lived with migraines since childhood, said HMS was not only doing the academic work she is interested in — advocacy, policy, and health justice — but also had social supports in place with HACHD.
“HACHD was a huge factor as I was deciding between schools,” said Schmalfuss. “There’s a student group. There’s a professional group working on disabilities. There are faculty who care about this and could serve as mentors.”
Universal design and cultural change
Advocates at HMS are also increasing support for students with both apparent and nonapparent disabilities through cultural change and universal design, which aims to make medical and academic environments fully accessible to everyone.
Video lectures are one example of successful universal design in the HMS curriculum. These lectures are a primary source of information in the Pathways curriculum, and they are closed-captioned by a professional with knowledge of scientific language. This helps accommodate students with auditory, visual, and other neuro-cognitive disabilities, but it benefits others, too. By turning on closed captions, students can see the correct spelling of terms or improve their comprehension.
As another example, a wellness room is available, providing a private space to help manage a disability, such as administering a medication or taking a nap. It also benefits any individual who needs time in a quiet space to de-stress or rebalance their sense of wellness.
Upping the odds
Montesano Scheibe and Biddle note that there is work left to do. “It’s still really hard,” Biddle said. “This is coming from two people who are pretty vocal advocates.”
But these initiatives mark progress on removing luck from the playing field and replacing it with a strategic plan for advancing medical education and medicine through disability care training, accommodation, and acceptance.
“Someday, I can be the doctor who’s diagnosing someone,” said Montesano Scheibe.
“Instead of saying, you’d better reconsider your whole life plan, I can say, I understand that this is scary, but I’m here to answer all your questions and assure you that we can figure this out.”
Wearable Technology's Growing Role in Monitoring Brain Health
Brain & Life ⎸ April 3, 2026
Experts explain how data from smartwatches and health rings can help track brain health and improve care for those with neurological conditions.
For more than a decade, people have used wearable technology (wearables) like the Oura Ring or Apple Watch to manage their physical and mental health. They track daily steps, heart rate, sleep patterns, and even blood oxygen levels. Now, neurologists are using wearables to help their patients manage chronic conditions such as epilepsy, Parkinson’s disease, and stroke.
Neurologists use the information that the wearable tracks to help them better understand a patient’s conditions and symptoms like seizure, migraine, multiple sclerosis-related fatigue, or Parkinson’s disease mobility change. “This can lead to earlier intervention and better patient engagement,” explains Smita Patel, DO, MS, FAAN, an integrative neurologist and sleep medicine physician at Endeavor Health in Glenview, IL. “[Wearables] can track sleep, circadian rhythm, and heart rate variability, all of which strongly influence neurological function,” she adds.
How Wearables Benefit Brain Health
Anup Patel, MD, FAAN, a professor in clinical pediatrics and neurology at the Ohio State University College of Medicine, encourages patients to use wearables to track health metrics throughout the day. “[The device] helps people to see that their heart rate spikes when they drink alcohol or their blood pressure rises when they eat salty food,” he explains. Research suggests that these wearables can spur behavior change.“Oftentimes, when patients see health consequences in real time, they’re more likely to focus on lifestyle interventions such as eating a heart-healthy diet or engaging in more regular exercise,” Dr. Anup Patel adds.
The wearables track sleep quality, physical activity, and heart rate variability, which all play a role in brain health. Dr. Smita Patel explains that getting seven to nine hours of sleep helps your brain clear out waste and consolidate memories; getting enough daily movement—7,000 to 10,000 steps—improves blood flow to the brain. Heart rate variability can reflect how well your body copes with stress. “Over time, combining this data with how you feel helps personalize routines that protect your brain and overall well-being,” she says.
Sometimes, wearable technology can even show signs of a potential neurological condition such as recurrent abnormal movements, significant sleep disruption, changes in heart rate variability, or new gait instability. The wearable can notice trends you might not otherwise see, serving as an early warning to make an appointment with a neurologist.
How Wearables Can Benefit People with Neurological Conditions
About one in three people with epilepsy continue to have seizures even with medical treatment. “Wearables can help with seizure detection,” says Gregory Krauss, MD, professor of neurology at Johns Hopkins University.
There are a couple of FDA-cleared wearables and mobile apps that help people with specific neurological conditions. The EpiMonitor wearable and the EpiWatch app for the Apple Watch detect tonic-clonic seizures. Tonic-clonic seizures are the type of seizure that most people picture when they think of a seizure: a person will lose consciousness and have bilateral muscle contractions.
The EpiMonitor and EpiWatch can sense small changes in your skin that happen when you sweat. During a tonic-clonic seizure, the body often sweats more than usual, so the wearable uses the sweat as a signal that a seizure may be happening. The wearable then sends a warning to both the patient and their caregiver.
“These devices can be very effective to reduce risk for sudden unexpected death in epilepsy (SUDEP), which usually occurs with tonic-clonic seizures,” says Krauss. “Research shows that the risk for SUDEP goes up dramatically if a person sleeps alone, probably because they end up face down in bed and suffocate. But if a caregiver is alerted that they are having a seizure, the caregiver can come in and rouse the patient.”
Both devices have about 98 percent accuracy at predicting seizures and a low false alarm rate. “I have found that these types of devices really help my patients because it gives them a sense of control,” says Dr. Krauss. “They can use the data to help them figure out if a seizure is coming, and they can also use it to help identify seizure triggers and gauge whether their current treatment is working.”
In a recent article published in Neurology®, it was noted that everyday wearables (e.g., Oura Rings and Apple Watches) make it much easier for a person to track their seizures and symptoms. Rather than keeping a written log, the wearable or mobile app can help record the information electronically and send it directly to their neurologist. This article also notes that patients tend to prefer everyday wearables rather than the wearables provided by a medical facility because they attract less attention and are less stigmatizing.
Other mobile apps, like StrivePD, can help patients log symptoms that can be shared with their health care provider. “They offer insight into day-to-day function that is difficult to capture during brief clinic visits,” says Dr. Smita Patel. Wearables can also help detect falls. “Some neurological conditions, such as stroke, Parkinson’s disease, dementia, or epilepsy, carry a higher risk of falls,” says Dr. Anup Patel.
Research shows that common wearables like the Apple Watch or Oura Ring can detect falls about 80 percent of the time, although they may be much less accurate for people who use a wheelchair. Another study is looking at whether wearables can help predict fall risk by measuring gait and balance, but it’s still preliminary.
A recent study from Neurology® shows promising results for using everyday wearables to detect multiple sclerosis disease progression.
Limitations of Wearables in Neurological Disorders
Wearables can be an important tool to help manage your neurological disorder, but they should always be used with guidance from your neurologist. “It’s easy to misunderstand and make assumptions on what the information shows you,” Dr. Anup Patel explains. “It’s important to always share your tracking information with your provider and discuss how it can benefit your overall care and treatment plan.”
Dr. Smita Patel agrees. “Wearables provide data, not diagnoses,” she explains. “They don’t directly measure brain activity, so they’re best used to observe trends.” When used thoughtfully, wearables help the patient and health care provider work together to create a personalized care plan and address concerns sooner.
How Patient-Centered Care and Patient Advocacy Go Hand-in-Hand
Editorial Team
Social Health Network ⎸ June 7, 2024
In the ever-evolving landscape of healthcare, the concepts of patient-centered care and patient leadership have become increasingly vital in shaping the quality and effectiveness of how medical care is given and received.1-3
These 2 concepts are closely linked. They work hand-in-hand with one another. Research shows that when done effectively, patient-centered care and patient leadership can foster a collaborative and empowering environment that puts the patient at the center of their healthcare journey.1-3
What is patient- and family-centered care?
Patient- and family-centered care is a healthcare approach that puts the patient’s needs and values first. This includes a patient’s family. Instead of a one-size-fits-all model, healthcare providers – doctors, nurses, aides, therapists, etc. – tailor their care to meet the unique needs of each patient.4
Patient-centered care emphasizes shared decision-making and open communication between healthcare providers, patients, and patient families. It aims to create an environment that is centered around support and respect so patients and families feel actively involved in their care.4,5
What is patient advocacy?
Patient advocacy, sometimes called patient leadership, is a concept that goes beyond the traditional roles of patients. It involves patients actively participating in treatment decisions, influencing healthcare policies, and contributing to the improvement of healthcare systems on a broader scale.
Patient leaders draw from their personal experiences to advocate for change. They strive to have the patient’s perspective considered at all levels of healthcare decision-making. This form of leadership can empower and inspire other patients to take a more active role in their own health journey.
There are many paths Patient Leaders can focus their efforts and attention toward. Here are some paths that the Social Health Network has spearheaded as central to this mission of patient-centered care:
Community awareness and education
Legislative advocacy
Digital creator
Healthcare collaborator
How the 2 concepts go hand in hand
At the core of patient-centered care is the belief that patients should be partners in their healthcare journey. This philosophy is also central to patient leadership. Patient leadership is about collaborating within the healthcare landscape in ways that create change. In doing so, it empowers others to speak up for their needs.4,5
When patients and families are empowered to become leaders in their care, it not only benefits them on a personal level but also contributes to a more patient-centric healthcare system.1-5
Examples in the healthcare space
Here are some examples of patient-centered care and patient leadership in action:
Shared decision-making
In patient-centered care, shared decision-making is a cornerstone. Patient leaders actively participate in discussions about treatment options and therapies to try. By working together with your healthcare team, you make sure your treatment plan aligns with your goals and values.5
Advocating for change
Patient leaders often advocate for systemic changes in healthcare policies and practices. For example, say a patient has faced challenges in getting affordable and accessible care. They may use their experiences to advocate for improved healthcare accessibility and affordability at a broader level.
Teaching advocacy to your child
Just as adults advocate for their healthcare needs, teaching children the importance of expressing what they need and want fosters a sense of empowerment and resilience. As a child's caregiver, parents can model patient leadership by involving their child in decisions related to their health. This helps lay the foundation for advocating for themselves down the road. Here are some ways you can do this with your child:
Involve them in discussions with healthcare providers about medicine preferences or treatment options
Ask them questions and really listen to their preferences and input
Encourage them to speak up about symptoms, concerns, and feelings during medical appointments
Discuss choices related to everyday life like nutrition, physical activity, school schedule, etc.
By teaching advocacy to children in a patient-centered way, parents contribute to raising a generation that is not only aware of their healthcare needs but is also equipped with the skills to lead and advocate for their well-being.
Finding a provider who respects your goals and values
Patient leadership skills are invaluable when it comes to finding a doctor who prioritizes your opinions and needs. This involves:3,4
Researching potential doctors
Reading reviews
Considering their communication style and willingness to engage in shared decision-making
Getting a second opinion
Listening to your gut – if a doctor doesn’t feel right to you, move on
Community engagement
Patient leaders often extend their influence to engage with their community. That could mean:
Organizing in-person or virtual support groups
Sharing stories online to raise awareness about a certain health condition
Speaking at an event
Participating in initiatives that promote health education
Writing letters to politicians and legislators to voice your opinions on healthcare decisions made in this country
Take your patient advocacy to the next level
The synergy between patient- and family-centered care and patient leadership has the power to be transformative. If you are interested in taking action and empowering others in the healthcare space, the Social Health Network has an incredibly informative and rewarding program that might be just what you’re looking for.
Take the Patient Leader Certification Program today and start making critical change.
Family Outcomes After Newborn Screening
Elizabeth Reynolds, PhD; Melissa Raspa, PhD; Sara M. Andrews, MPH; Donald B. Bailey, PhD
Newborn screening (NBS) is a public health program that identifies babies with health conditions that need early treatment. Determining benefit of NBS has traditionally focused on outcomes for children. Families also benefit from NBS, but the range of family outcomes has not been defined. We conducted a systematic process with extensive interest group input to identify 8 possible outcomes for families who have a child diagnosed with a condition after a positive NBS result: (1) families understand their child’s condition and treatment options; (2) families access medical care and treatments; (3) families manage their child’s needs and routines; (4) families advocate for their child; (5) families access community resources, services, and programs; (6) families access social support; (7) individual family members maintain personal well-being; and (8) families feel successful in functioning as a unit. These outcomes provide a framework for developing measurement tools by which benefits for families after NBS can be documented and ultimately used to evaluate strategies that could maximize outcome attainment.
Subjects: Fetus/Newborn Infant
Topics: neonatal screening, personal satisfaction, social support, genetics
Introduction
Newborn screening (NBS) is a highly successful public health program, screening babies shortly after birth for health conditions that are not apparent but require early treatment before symptoms appear. States screen for a variety of conditions based on guidance from the Recommended Uniform Screening Panel, which contains metabolic, endocrine, hemoglobin, and other types of disorders. NBS can have a wide range of benefits for children, families, health care systems, and society, all of which are important. But, of the range of potential benefits, “the ability to treat the condition adequately, when discovered, is perhaps the most important.”1 This classic statement from Wilson and Junger has served as a guiding principle for NBS for more than 50 years, enabling access to a diagnosis and treatment following a positive screening result that reduces child morbidity or mortality.2
Benefits can also accrue to families, both proximal (eg, reducing or eliminating the painful diagnostic odyssey) and distal (eg, enabling access to support groups).3–5 But family benefit is generally considered an adjunct to the core purpose of NBS.6,7 Family outcomes after NBS are largely unknown, hindered by lack of a data-driven conceptual framework. Without such a framework, defining potential benefits or developing an instrument by which outcomes could be assessed is impossible.
This article presents results from a systematic approach to identify and categorize family outcomes after NBS. The study team drew on our prior experience identifying family outcomes in early intervention (EI) programs,8–11 reviewed literature, and gathered input from NBS interest groups. Supported by an expert advisory committee (EAC), we used an iterative process to integrate these data and identify 8 desired outcomes for families of a child diagnosed with a serious health condition through NBS.
The Essentials Of Person-Centered Assessment
John Raffaele
NADSP ⎸ March 10, 2026
The following article is part of an ongoing series about the NADSP Competency Areas. The NADSP Competency Areas offer DSPs the opportunity to address challenges, work on issues identified by the person they support, or assist a person in pursuing a particular goal. Each Competency Area has corresponding skill statements that describe the knowledge and skills DSPs must have to demonstrate competency in each area.
This blog is about the skill statement “The competent DSP conducts or arranges for assessments to determine the needs, preferences, and capabilities of the participants using appropriate assessment tools and strategies, reviewing the process for inconsistencies, and making corrections as necessary,” within the NADSP Competency Area: “Assessment.”
Inside The Competency Area
AssessmentEmbracing thorough and person-centered assessment practices is essential for direct support professionals (DSPs) because every person receiving services has unique strengths, preferences, communication styles, and support needs. By conducting or contributing to assessments, DSPs help create the person centered supports that fit the individual person and not just a ‘one size fits all’ approach. This is the essence of being a person centered practitioner. Assessments can be formal and written documents as well as informal and intuitive. Either way, DSPs must have a solid relationship with the person supported in order to assess situations.
The competent DSP conducts or arranges for assessments to determine the needs, preferences, and capabilities of the participants using appropriate assessment tools and strategies, reviewing the process for inconsistencies, and making corrections as necessary.
Competency Area: Assessment
Inside The Skill Statement
The competent DSP conducts or arranges for assessments to determine the needs, preferences, and capabilities of the participants using appropriate assessment tools and strategies, reviewing the process for inconsistencies, and making corrections as necessary.
DSPs spend more time with people supported than nearly any other professional. They observe daily routines, challenges, and successes. This makes their input vital for accurate, meaningful assessments and ongoing adjustments. When DSPs understand a person’s capabilities and goals, they can provide supports that build independence, promote choice, and enhance participation in community life.
DSPs who embrace assessment practices are better able to notice when supports aren’t working. When assessment practices are used, the DSP can better communicate changes or concerns in plans and goals. Good assessment skills can help prevent small issues from growing into larger problems! Assessments rooted in listening, observing, and understanding reinforce the central mission of DSP work which includes supporting people to live the lives they choose.
The Impact On People Receiving Services
Good assessment by DSPs directly improves the lives of people with disabilities in several meaningful ways:
It ensures supports match the person’s real needs. DSPs observe daily routines, challenges, preferences, and strengths. When these observations are used in assessment, the person receives supports that are accurate, individualized, and truly useful rather than generic or assumed.
A DSP that has competence in Assessment skills promotes independence and skill-building. Effective assessments identify what the person can already do as well as where they may need some supports.
Assessment improves health and safety, as we know that DSPs are often the first to notice changes in behavior, early signs of medical issues, risks in the environment, and emotional or mental health concerns.
Good assessment makes services more responsive and more human.
Putting It All Into Practice
DSPs naturally observe people throughout the day. Turning those observations into assessment means paying attention to changes in behavior, mood, routines, and skills. It may mean noticing patterns – times when things go well and when challenges occur.
Watching for environmental triggers or supports that make a difference is something a competent DSP will do. It is vital to document observations promptly and accurately. Even small daily notes can reveal big trends over time!
DSPs need to listen to the person they support and honor their individual communication style. Whether someone communicates through words, gestures, devices, or behavior, be sure to ask questions that help you understand that person’s preferences and goals.
You should monitor how the person responds to different tasks, choices, and situations and always seek out the person’s perspective. Never rely on what others may assume about the person you support. DSPs need to remember that every interaction can provide data that helps shape your support.
Staff should always use formal assessment tools consistently, which may include:
Adaptive behavior assessments
Preference inventories
Risk or safety assessments
Daily living skill checklists
Communication profiles
Applying tools consistently ensures the team has reliable, comparable information. If you have questions about an assessment tool, seek guidance from a supervisor or team member who may be familiar.
Share information with your team! DSPs play a key role in team‑based assessment by reporting observations during team meetings and frequently communicating updates about progress or concerns. DSPS can offer great insights that others may not see.
Always maintain a person‑centered approach. This can be grounded by focusing on strengths rather than deficits. Do your best to ask what matters most to the person, ensuring the person’s voice guides decisions! See people as partners – not objects of evaluation.
All of this reinforces the mission of DSP work and leads to supporting people to live the lives they choose.
Quick Tips
How can you help embrace this skill statement and implement it? Here are some quick tips!
Observe daily patterns and note even small changes
Ask the person what they want, need, and prefer
Document accurately, promptly, and without assumptions
Use behavior as communication and look for meaning
Share observations with the team regularly
Track what supports work, and what doesn’t
Reflect on your own actions and their impact
Look for strengths before identifying needs
Review support plans and align your observations