Together, a Mom & a Patient Invent What's Helpful

Brittany McMahon • June 20, 2020

Brenda is the Mother of her son Maclain who has cerebral palsy, but she's also a creative problem solver. She and her friend Kristy Dickenson (who suffers from both Ehlers Danlos Syndrome and Ankylosing Spondylitis) compared notes about managing complex health conditions at home and they agreed that there had to be a better way using technology. Their idea of an app called Chronically Simple was born. I asked Brenda to tell me more and here are her responses to all my questions!

Q: Brenda, tell us about your own caregiving experience and why you became involved in Chronically Simple .

A: My son Maclain is now 12 years old and has a diagnosis of severe Cerebral Palsy. In addition to his CP, he is also profoundly deaf and has many Gi issues. He is an amazing, smart, funny and handsome boy, who requires 24 hour care for all of his daily living tasks. Everything from eating, and drinking, dressing, bathing, even changing the tv channel are all tasks that Maclain cannot do on his own. My son is very engaged socially and loves school and travel and adventure, and is like a typical tween, so we have to be available to help him at all times as he doesn’t ever want to miss a beat. Since the day he was born, where we was rushed to the NICU and spent 3 months there, followed by multiple hospital stays and ER visits, and surgeries I have been there. Organizing therapies and managing doctor appointments, ordering special equipment, facilitating playdates, planning travel, administering medications, advocating, supporting. This has been life as his caregiver, while also being a wife and a mother to an older son as well. It is a role I am proud of, and I am grateful for, but a role that is physically and emotionally exhausting.

Photo of Brenda and Maclain courtesy of the National Post.

I became involved with Chronically Simple right from the get go. Kristy Dickinson and I had become friends through our children, and over the course of many conversations we started to identify the gaps that seemed to exist for caregivers and patients when it came to organizing and tracking their multiple appointments, and contacts, and medications and we would often discuss the burden of carrying around binders full of information. So I made myself available throughout the creation and implementation of CS to offer a caregiver perspective on app features, and product design that might differ from things that a patient might want from CS. I continue to be involved in marketing, community outreach, development and any other aspect of CS that needs that caregiver lens.

Q: Describe Chronically Simple and how it can help caregivers to manage information?

A: Chronically Simple is a web-based and mobile app that is a centralized hub that allows caregivers to manage all the medical information for their loved one in one secure, easily accessible location. It is basically a digitized version of the binders we all keep.

Q: Why do you think Chronically Simple is a transformative innovation?

A: I think that Chronically Simple is a transformative innovation because it was built entirely by patients and caregivers. Every section of the app comes from a real life pain point of either a person living with a complex condition or a person caring for a loved one.

Q: What is your role in the company? How can caregivers like you contribute to product development?

A: I have been a part of Chronically Simple from idea to conception to launch. I was able to use my experiences to build out the caregiver journey within the app and ensure that features are created that alleviate stress versus becoming just one more item on my to-do list. I am the Director of Caregiver Services. I am a part of everything that ties into caregiving – from product development to marketing to sharing my journey and how Chronically Simple has helped our family. Chronically Simple innovates based on user feedback so any user is able to share their ideas and features that they feel would be beneficial for them. This is how our roadmap is created.

Q: How will I know my information is private? Who can join? (can medical professionals be invited?)

A: Chronically Simple worked with leaders in internet safety and data privacy & security to build out a transparent privacy policy and terms of use. The founder of the app is also a patient and a user. Security is our top priority. The Privacy Policy and Terms of Use are clear and transparent. Data entered into the app is encrypted and stored securely in Google Cloud in Canada. The primary user has control over who they invite to participate as a member of their care team. They choose who they invite and what parts of their information they have access too.

Q: What devices are compatible with the app? Do you have to be internet savvy to use it?

A: Chronically Simple has been built to take complex problems and provide a simple, easy to use solution. There is a web based application which is accessible via Chronically Simple’s website and is the same as the mobile application which is available on Apple and Android devices. We used Kristy’s 69 year old non-technical father to test out functionality of the app to make sure it was easy for non-technical people to navigate and use.

Q: Finally, what is the cost of Chronically Simple ?

A: There's a special offer on now to get 6 months free. After that, it's $9.99/month or $107.99/year (reflecting a 10% discount for the yearly rate.)

If you believe this might be a helpful tool to assist you and need financial assistance to do so, please contact our office for scholarship award money that is available. 410-543-0665 EXT. 118

Image from https://www.ridehirta.com/invisibledisabilities
By JT Moodee Lockman February 10, 2025
BALTIMORE -- A proposed bill in Maryland would allow residents to disclose "nonapparent disabilities" on their driver's licenses or identification cards. Eric's ID Law, or HB707, [01] would require the Motor Vehicle Administration (MVA) to add a certain symbol to licenses, ID cards or moped permits indicating that the applicant has a nonapparent disability. The idea was proposed by a Maryland family during an appearance on ABC's "The View," The Baltimore Banner reported. [02] The Carpenter-Grantham family had the idea after the 2020 murder of George Floyd [03] which sparked protests across the nation. "I realized that I have an African American son with an invisible disability," mother Linda Carpenter-Grantham said during the TV appearance. The bill was introduced in the state Senate during the 2024 legislative session but missed a deadline in the House. The proposed bill would require the MVA to establish public outreach programs to educate the public about the new symbols or notations. The MVA would work with disability advocates to design the symbols. The MVA would be prohibited from sharing information about an applicant's disabilities. The bill would also prevent the MVA from asking an applicant to provide proof of their disability or reject an application because the listed disability does not match other documents associated with the applicant. Under the bill, the Maryland Police Training and Standards Commission and Department of State Police would have to immediately implement training for police interactions with those who have nonapparent disabilities noted on their IDs. The bill will be the subject of a hearing on Feb. 13 at 1 p.m. What is a nonapparent disability? According to the proposed bill, a nonapparent disability is a health condition that is not immediately obvious or visible, this could include developmental or intellectual disabilities. According to a study by the National Institutes of Health (NIH), [04] common nonapparent disabilities are anxiety and depression, Alzheimer's, deafness, post-traumatic stress disorder (PTSD), attention-deficit hyperactivity disorder/attention deficit disorder (ADHD/ADD), and diabetes among others. People with developmental disabilities are about seven times more likely to encounter law enforcement than neurotypical individuals, according to a 2001 study by the Department of Justice. [05] Citations: [WEBSITE] Legislation: Eric's ID Law , or HB707: https://tinyurl.com/4r5s8ntp [ARTICLE] Maryland mom and her autistic son pitch a disability safety bill on ABC’s ‘The View’: https://tinyurl.com/4nzukspm [ARTICLE] George Floyd's death sparks large protests, confrontations with police: https://tinyurl.com/263hk9sk [STUDY] Living with invisible medical disabilities: experiences and challenges of Chilean university students disclosed in medical consultations: https://tinyurl.com/bdexd9js [ABSTRACT] Contact with Individuals with Autism: Effective Resolutions: https://tinyurl.com/56d6yd44 [ORIGINAL ARTICLE] Proposed bill would allow Marylanders to disclose nonapparent disabilities on their IDs: https://tinyurl.com/9k7z6nyh 
Advocates and members of the developmental disability community rallied Monday to demand legislators
By Konner Metz February 7, 2025
Advocates and service providers on the Eastern Shore are joining Maryland’s disability community to call for rollbacks on projected cuts to funding for developmental disability services. Scott Evans, executive director of the Benedictine School in Ridgely, said the near $200 million in cuts to Developmental Disabilities Administration funding outlined in Gov. Wes Moore’s proposed budget would be the worst he’s seen in his 25-year career. “Bottom line, these proposed cuts of close to $200 million in state funds would be catastrophic to the community service providers, as well as the people we support and our employees,” Evans said. “It would literally set us back years in funding.” The proposed cuts come as the state faces a near $3 billion deficit. Some advocates from the Eastern Shore note they could reduce the choices available for families and people with disabilities. Jonathon Rondeau, president and CEO of The Arc Central Chesapeake Region, says families and people with developmental disabilities on the Eastern Shore already have a limited number of options. “There are less agencies providing services for people with disabilities on the Shore,” Rondeau said. “So if there is instability in the system, it can potentially reduce choice for people with disabilities.” Evans echoed the same sentiment, and added that the cuts could hurt Benedictine’s ability to stay competitive when hiring employees. In recent years, the nonprofit school and service provider has raised wages in an attempt to attract quality employees. “All that has been an investment we’ve made because of the funding that we have received,” Evans said. “Now to wipe that funding out basically overnight means that we’re stuck in a holding pattern.” THE CUTS In Moore’s budget proposal, his office notes that in addition to the $1.3 billion set for the Developmental Disabilities Administration in fiscal year 2026, the state will “better leverage federal funding and align Maryland’s program more closely with federal guidance and practices across other states.” Evans says it’s not clear how DDA would implement the cuts, though his team at Benedictine team is working to crunch the numbers. Evans said it would cost the school hundreds of thousands of dollars of funding at the very least. Specific cuts that worry advocates include reductions in “dedicated hours” funding for those in community living programs, as well as a $14.5 million blow to self-directed services funding. “Someone who is in their late 60s and retired and chooses to stay home every day rather than going to a day program won’t necessarily have that choice anymore,” Rondeau said regarding the dedicated hours cuts. “There won’t be the funding available for that. It’ll be difficult for providers such as The Arc to support someone who may have significant health issues and need to go to the doctors.” Karenna Jones of Salisbury worries that cuts to self-directed services will impact the ability for her family to take care of her 26-year-old son, Kenneth, who has a traumatic brain injury and lives at home. Jones says as long as she lives, she “would never put (her) kid in a provider home.” But large cuts in funding may leave her with no choice. “We might be forced to do that,” Jones said. “It’s not fair.” RALLY IN ANNAPOLIS With the uncertainty swirling, hundreds packed Lawyers Mall in Annapolis Monday night, protesting for legislators to reject the proposed cuts. Leaders at the Benedictine School and The Arc Central Chesapeake Region attended, as did Jones. “I’m always amazed at how quickly the folks within the disability community can rally around a cause, and a cause that means so much to them,” Evans said. “And also, to some extent, the positive response we’ve gotten from legislators about these cuts.” Jones said the rally — organized with just three days notice by a developmental disability coalition — was inspiring and beautiful. “We were saying, ‘Save our DDA services. Save it. Don’t leave us behind,’” Jones said. Citations : [ORIGINAL ARTICLE] ‘Catastrophic:’ Eastern Shore advocates share impacts proposed disability cuts may bring: https://tinyurl.com/5ahffbu8
Advocates for people with developmental disabilities rallied at the State House Monday night in oppo
By Danielle J. Brown February 5, 2025
State Sen. Craig J. Zucker (D-Montgomery), who has a son with autism, promises to be community's ally.
Robert F. Kennedy Jr. testifies before the U.S. Senate Committee on Finance concerning his nominatio
By Michelle Diament February 5, 2025
Despite concerns about his history promoting a debunked link between autism and vaccines, a key U.S. Senate panel advanced Robert F. Kennedy Jr.’s nomination to become the nation’s health secretary. The Senate Finance Committee voted 14 to 13 this week along party lines to send Kennedy’s nomination to the full Senate, which will have final say over whether he will take over the Department of Health and Human Services. The vote came after Sen. Bill Cassidy, R-La., said he would back Kennedy despite expressing reservations just days earlier over his anti-vaccine past. Kennedy has spent years blaming the increase in autism prevalence on childhood vaccinations. During confirmation hearings last week, Cassidy, a medical doctor, unsuccessfully pressured [01] Kennedy to concede that there is no link between autism and vaccines. But, Cassidy said he ultimately decided to back Kennedy after receiving “serious commitments” from the Trump administration. Specifically, Cassidy indicated that he’s been assured that the Centers for Disease Control and Prevention will not remove statements on its website highlighting that vaccines do not cause autism. Kennedy also committed to “work within current vaccine approval and safety monitoring systems and not establish parallel systems” and “maintain the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices recommendations without changes,” Cassidy said. While Kennedy’s nomination is not guaranteed, Cassidy had been viewed as a significant question mark and his support will ease the path to full Senate confirmation. President Donald Trump has said [02] that he’s “open to anything” when it comes to investigating the increase in autism prevalence in recent decades and he’s suggested that Kennedy would have leeway to look into the causes of autism including the long-discredited connection between autism and vaccines. “20 years ago, Autism in children was 1 in 10,000. NOW IT’S 1 in 34. WOW! Something’s really wrong. We need BOBBY!!! Thank You! DJT,” Trump posted to social media just before the Senate committee met to vote this week. In fact, the latest CDC estimates suggest 1 in 36 children [03] have autism compared to 1 in 150 in 2000. Kennedy’s nomination is raising concerns for several national autism and disability organizations. A dozen groups including the Autism Society of America, the Autistic Self Advocacy Network, the National Association of Councils on Developmental Disabilities and The Arc of the United States put out a statement ahead of Kennedy’s confirmation hearings saying that vaccines do not cause autism. “Perpetuating myths linking vaccines to autism does a disservice to the autism community by distracting from their pressing healthcare needs,” the groups said. Instead, the organizations indicated that policymakers should focus on actual needs in the autism community such as access to health care, mental health services, education and more. “The Autism Society is still very disturbed that Mr. Kennedy has not clearly stated that vaccines are not linked to autism,” Christopher Banks, president and CEO of the Autism Society of America, said after Kennedy’s nomination advanced. “Any direction to reinvestigate debunked myths, will reverse progress, and deter funding that addresses healthcare inequities and services that the autism community needs now.” Citations: [ARTICLE] HH S Nominee RFK Jr. declines to reject vaccine autism link: https://tinyurl.com/mkfpb32s [ARTICLE] Trump signals his administration will investigate debunked link between vaccines and autism: https://tinyurl.com/334jkspd [ARTICLE] Autism now affects 1 in 36 kids CDC says: https://tinyurl.com/3m5hve86 [ORIGINAL ARTICLE] Autism Takes Center Stage As RFK Jr. Nomination For HHS Secretary Advances: https://tinyurl.com/jmephrju
rom left, Laura Howell, CEO of Maryland Association of Community Services; Ande Kolp, executive dire
By Danielle J. Brown January 27, 2025
Despite some conversations between state officials and the disability community, advocates say they’re not being heard.
A public service announcement from Autism Speaks offers information about the signs of autism. (Ad C
By Shaun Heasley January 15, 2025
New estimates show that 61.8 million people around the globe have autism and that the developmental disability is among the most common health issues facing youth. As of 2021, researchers found that 1 in 127 people worldwide were on the spectrum, according to findings published [01] recently in the journal The Lancet. Autism was twice as likely to affect males versus females and there was high prevalence among young people, with the condition ranking in the top 10 causes of non-fatal health burden for those under age 20, the study found. The findings are based on a review of studies and data that was conducted as part of the Global Burden of Diseases 2021 Study, which is considered the largest scientific effort to measure the prevalence and impact of various conditions. The autism rate identified in the new study “substantially changed estimates” from the last version of the report in 2019, but the researchers attributed the increase to updates in their methodology, in particular excluding studies that were likely to undercount prevalence. Researchers identified variances in prevalence by geography with autism affecting 1 in 163 people in tropical Latin America versus 1 in 65 people in the higher-income Asia Pacific region. “There are many factors contributing to this wide range, including varying exposures to risk factors, cultural variation, behavioral norms, or screening tools and diagnostic tools being used in those locations, and also how people are responding to these surveys, or whether they even choose to respond or participate in the survey in the first place,” said Dr. Damian Santomauro, an affiliate assistant professor at the Institute for Health Metrics and Evaluation at the University of Washington who led the study. “Work is currently ongoing to explore ways to quantify and correct for these differences so we can paint the most accurate picture of the prevalence of autism globally.” The latest estimates from the Centers for Disease Control and Prevention [02] indicate that 1 in 36 American children are on the autism spectrum. That figure is based on data collected on 8-year-olds in 2020. By contrast the rate was 1 in 150 in 2000. Experts attribute the rise in diagnosis to greater awareness of the developmental disorder. Those behind the new study say they hope their findings will prompt better policies and greater supports for individuals with autism around the world. “The prevalence and health burden of autism persisted across the lifespan,” Santomauro said. “These findings highlight the need for early detection and lifelong supportive services for autistic individuals.” Citations: [ARTICLE] The global epidemiology and health burden of the autism spectrum: findings from the Global Burden of Disease Study 2021: https://tinyurl.com/4xwk9ebm [ARTICLE] Autism now affects 1 in 36 kids, CDC says: https://tinyurl.com/3m5hve86  [ORIGINAL ARTICLE] Autism Affects More Than 60 Million Worldwide, Study Finds: https://tinyurl.com/24fz2bs3
By Karen Lee January 2, 2025
The infrastructure to train and keep direct service providers for those with intellectual and developmental disabilities has been neglected, resulting in a crisis that must be addressed, writes Karen Lee. Photo by Getty Images.
Walmart is offering customers with disabilities the option to get assistance from a visual interpret
By Michelle Diament December 16, 2024
The nation’s largest retailer is piloting a new program aimed at enabling people with disabilities to shop more independently. Walmart is providing free access to visual interpreters at its stores and on its website. The company is partnering with Aira, a third-party service, to connect customers with sighted interpreters who can relay detailed information in real time about their surroundings, help them navigate or read signage, labels and more. To use the service, individuals stream live video of their surroundings through the Aira mobile phone app. Visual interpreters are trained to offer objective feedback so that users can make independent choices, Walmart said. And, since the retailer is offering complementary access to the service, company officials said that customers will be able to take as long as they need to wade through their options. Gayatri Agnew, head of Walmart’s Accessibility Center of Excellence, said that offering access to Aira is just the company’s latest move to improve the shopping experience for people with disabilities. She cited the recent addition of sensory-friendly shopping hours, making Caroline’s Cart available at every store and expanding Walmart’s adaptive product lines. “The reality is, we have tons of shoppers with disabilities who we want to make sure are having as good, if not better, of a shopping experience with us as someone who doesn’t have a disability,” Gayatri said. 
Pixabay Stock Photo
By Zoe Beketova, Yale University December 11, 2024
People with disabilities (PWD) make up 25% of the U.S. population. They face elevated mental health concerns and are more likely to utilize mental health services compared to non-disabled individuals. Yet, PWD also report higher unmet mental health service needs and barriers to accessing care. Dr. Katie Wang, Ph.D. '14, associate professor in the Department of Social and Behavioral Sciences at the Yale School of Public Health (YSPH), and colleagues recently examined the experiences of PWD who engaged in mental health services. The study is published in [ 01 ] the journal SSM - Qualitative Research in Health. "We interviewed 20 U.S. adults with a wide range of visible and invisible disabilities," said Wang, a social psychologist and the study's lead author. "Participants identified ableism as a major concern when they talked about their experiences in seeking mental health services ." Ableism is prejudice and discrimination against people with disabilities, based on the belief that people without disabilities are superior. It can be conscious or unconscious and is embedded in institutions, systems, and society as a whole. It manifests in many forms, including harmful stereotypes, misconceptions, and generalizations. This can include the belief that people with disabilities are less able to contribute and participate in society; and the belief that people with disabilities are to be pitied or viewed as inspirational rather than just as normal human beings. Participants in the qualitative study [ 02 ] ranged in age from 22 to 67. Their disabilities included chronic health conditions (e.g., epilepsy), mobility disabilities (e.g., spinal cord injury), sensory disabilities (e.g., blindness) or, for a majority, a mixture of different disabilities alongside mental health conditions. Upon speaking with the participants about their experiences with mental health care providers, the researchers identified several recurring themes. A common experience cited was providers holding misplaced assumptions about the impact of disability on mental health as well as a general lack of knowledge about disability, either overlooking the connection between mental health and the disability or minimizing the role of disability in a person's life. Many participants also described providers not believing their lived experiences, being stereotyped, or ignored. "These results underscore the importance of emphasizing disability competency when training the next generation of mental health providers," Wang said. Care is a challenge for people with multiple minority identities The study also explored the quality of mental health care received by individuals with multiple minority identities, including having a disability. Such individuals often struggle with receiving professional help, yet little research exists on the issue. One of the participants, when discussing an unhelpful provider, said that it's hard for them, as a person with many minority identities, "to know which identity it is and why it triggered them [the provider]." The researchers found that having intersecting minority identities—such as being Black or transgender and disabled—presents additional barriers to receiving quality care. Systemic ableism undermines good intentions Another major point raised by participants was the systemic ableism within mental health care systems. "What struck me in particular is the findings pertaining to systemic ableism, specifically, how even well-intentioned mental health care providers can perpetuate ableism, given that they are working in a fundamentally ableist system," Wang said. "None of the people … want to hurt us, but the structures are built to hurt us and so they always will," one of the participants stated. Participants raised this point when discussing the emotional pain providers often unwittingly caused them during a mental health session. A need for better access to care A final point identified in the study was that physical accessibility barriers also present obstacles for PWD accessing mental health care. Telehealth, a form of online health care support, has been praised for mitigating some of the physical barriers that people face, but not all participants in the study could navigate virtual interactions. For example, lip reading is particularly difficult behind a virtual screen, some deaf or hard of hearing participants said. "I think what we want to be careful of, and what a lot of participants were warning against, is we should not be thinking of telehealth as a silver bullet," Wang said. "It does not fix accessibility across the board. It does not remove all access barriers. But having telehealth as an additional tool in the toolbox is definitely a benefit for the disability community." In response to the findings, the researchers are calling for systemic structural reforms such as increased training on disability competency for providers as well as the recruitment and—vitally—retainment, of disabled faculty and students to normalize discourse. For practitioners, the study recommends self-education on disability awareness and more of a focus on improving accessibility to their care, whether through increased flexibility, universal design practices, or openness to learning about disabilities. Wang stressed that ableism is more than just an interpersonal phenomenon: it is deeply embedded in health care systems. With YSPH's focus on addressing inclusivity, intersectionality, and belonging in public health and health care, studies such as Wang's shine a light on the experiences of PWD across different conditions and identities when seeking mental health support. More information: Katie Wang et al, Ableism in mental healthcare settings: A qualitative study among U.S. adults with disabilities, SSM - Qualitative Research in Health (2024). DOI: 10.1016/j.ssmqr.2024.100498
Special Olympics World Winter Games Turin 2025 Logo
December 11, 2024
The President will host a dinner honoring Special Olympics athletes as they prepare to compete at the upcoming Special Olympics World Winter Games in Turin in March 2025.
Show More
Share by: