Featured Stories
Renowned Physician-scientist Brian S. Kim, MD, Joins Northwell as First Chief Biotechnology Officer
NEW HYDE PARK, New York, July 7 -- Northwell Health issued the following news release:
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Renowned physician-scientist Brian S. Kim, MD, joins Northwell as first chief biotechnology officer
Dr. Kim will oversee IP development and accelerate the translation of breakthrough research into patient treatments
Building on its legacy as the global pioneer in bioelectronic medicine, the Feinstein Institutes for Medical Research, the research home of Northwell Health, today announced the appointment of Brian S. Kim, MD, MTR, as vice president and chief biotechnology officer at Northwell and head
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NEW HYDE PARK, New York, July 7 -- Northwell Health issued the following news release:
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Renowned physician-scientist Brian S. Kim, MD, joins Northwell as first chief biotechnology officer
Dr. Kim will oversee IP development and accelerate the translation of breakthrough research into patient treatments
Building on its legacy as the global pioneer in bioelectronic medicine, the Feinstein Institutes for Medical Research, the research home of Northwell Health, today announced the appointment of Brian S. Kim, MD, MTR, as vice president and chief biotechnology officer at Northwell and headof intellectual asset management at the Feinstein Institutes. Dr. Kim will also serve as the inaugural Robin and Jack Ross Chair in Bioelectronic Medicine and Neuroimmunology and professor in the Institute of Bioelectronic Medicine.
A leading dermatologist and physician-scientist, Dr. Kim joins the Feinstein Institutes from the Icahn School of Medicine at Mount Sinai. He has authored more than 190 peer-reviewed publications in leading journals, including Cell, Nature, Science, New England Journal of Medicine and JAMA. He has been continuously funded by the National Institutes of Health since 2011 and leads the Allen Discovery Center for Neuroimmune Interactions, a $10 million multi-institutional center funded by Allen Family Philanthropies.
"Dr. Kim bridges medical research, clinical innovation and biotechnology entrepreneurship, and will innovate the field of bioelectronic medicine," said Kevin J. Tracey, MD, president and CEO of the Feinstein Institutes and the Karches Family Distinguished Chair in Medical Research. "As our first chief biotechnology officer, he will accelerate discoveries from our labs into useful treatments that reach patients faster."
Dr. Kim's research has led to significant clinical advances, including the design of pivotal clinical trials that resulted in two first-in-class U.S. Food and Drug Administration-approved treatments for atopic dermatitis and prurigo nodularis. As an inventor of itch-centered technologies and holder of multiple patents, he co-founded Alys Pharmaceuticals, a clinical-stage immuno-dermatology biotech company, as well as two additional biotech companies, Neurommune Therapeutics and Attu Therapeutics, where he also serves as chair of the scientific advisory board.
His contributions to medicine have been recognized with numerous prestigious awards, including the Marion B. Sulzberger Award, Stephen I. Katz Lectureship, Donald Y. M. Leung Award, American Skin Association Research Achievement Award in Discovery, and the Young Dermatologist Achievement Award from the International League of Dermatological Societies. Dr. Kim has also served on the editorial boards of several prominent journals, including the Journal of Allergy and Clinical Immunology, Journal of Immunology, eLife and Cell Reports Medicine.
"The opportunity to lead biotechnology initiatives while advancing bioelectronic medicine and neuroimmunology research represents the perfect union of my clinical, scientific and entrepreneurial passion and expertise," said Dr. Kim. "I'm eager to collaborate with all of the teams at the Feinstein Institutes and colleagues throughout Northwell Health to speed up the process of bringing laboratory breakthroughs into practice."
Bridging research and patient care through bioelectronic medicine
Dr. Kim's endowed chair is made possible by the generosity of Feinstein Institutes board vice chairman Jack Ross and his wife, Robin, assistant vice president of principal gifts at Northwell Health. In his leadership role, Dr. Kim will oversee the strategic development and management of biotechnology initiatives and intellectual property assets while continuing to advance research in bioelectronic medicine and neuroimmunology.
In addition to his research and leadership responsibilities, Dr. Kim will hold an appointment as professor in the department of dermatology at Northwell Health.
"Dr. Kim's appointment reflects our commitment to transforming bold research into better outcomes for our patients," said John D'Angelo, MD, Northwell's president and CEO. "With his leadership, we can better translate breakthrough science and pioneer the future of medicine while staying grounded in our mission to produce knowledge to cure disease."
The Feinstein Institutes is a global pioneer in bioelectronic medicine, a revolutionary field that uses electrical stimulation of the nervous system to treat disease. Under the leadership of Dr. Tracey, researchers discovered the inflammatory reflex and demonstrated that the nervous system can be harnessed to control inflammation and immune responses. This groundbreaking work led to the first FDA-approved vagus nerve stimulation implant to treat rheumatoid arthritis in 2025, with ongoing research addressing Crohn's disease and other inflammatory conditions. Dr. Kim will help advance this research and its translation to patients through Northwell's new clinical Center for Bioelectronic Medicine, which brings these cutting-edge therapies to patients with previously treatment-resistant conditions.
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Original text here: https://feinstein.northwell.edu/news/the-latest/northwell-appoints-first-chief-biotechnology-officer
[Category: Health Care]
Montefiore Einstein Investigators Demonstrate How a New Setting for a Digital Monitoring Device Can Transform Diabetes Care
BRONX, New York, July 7 -- Montefiore Einstein issued the following news release:
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Montefiore Einstein Investigators Demonstrate How a New Setting for a Digital Monitoring Device Can Transform Diabetes Care
New JAMA Network Open Study Highlights an Effective and Accessible Approach to Enhancing Diabetes Management
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New research from Montefiore Einstein investigators reveals that an underutilized tool, more commonly employed by endocrinologists, can transform diabetes outcomes in primary care clinics. Despite a proven track record of improving diabetes management, only 10% of people with
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BRONX, New York, July 7 -- Montefiore Einstein issued the following news release:
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Montefiore Einstein Investigators Demonstrate How a New Setting for a Digital Monitoring Device Can Transform Diabetes Care
New JAMA Network Open Study Highlights an Effective and Accessible Approach to Enhancing Diabetes Management
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New research from Montefiore Einstein investigators reveals that an underutilized tool, more commonly employed by endocrinologists, can transform diabetes outcomes in primary care clinics. Despite a proven track record of improving diabetes management, only 10% of people withdiabetes who need insulin use a Continuous Glucose Monitor (CGM) - a small wearable device that consistently tracks blood sugar levels.
Today, findings published in JAMA Network Open show that more than 2,000 patients who were prescribed CGMs were 13% less likely to require a hospital stay, 18% less likely to go to the emergency room and overall, experienced significant improvements in their blood sugar management compared to those not on CGMs. This analysis inspired new focus on increasing CGMs in primary care, centering around 18 Montefiore Medical Group (MMG) primary care clinics across Montefiore Medical Center.
"More than 40 million people in the U.S. are living with diabetes, so a creative and collaborative approach is needed to ensure that people can access the tools that will help them successfully manage their condition," said lead author Jovan Milosavljevic, M.D., M.S., endocrinologist and assistant professor of Medicine, Division of Endocrinology, Department of Medicine, Montefiore Einstein. "As an endocrinologist, I have seen firsthand the positive impacts of CGMs, and with people visiting their primary care doctors much more often, we have an incredible opportunity to empower primary care teams and our patients in this setting."
Moving Beyond a Point in Time
The model that brought CGMs successfully from specialists to the primary care setting reflects efforts from senior author, Shivani Agarwal, M.D., M.P.H., senior director of Community Healthcare Improvement & Strategy at Montefiore Einstein, to redesign systems that shift care to the most appropriate settings, providing population health tools that are evidence-based and outcome-shifting.
"In healthcare, many of the challenges to improving outcomes stem from both having a system that isn't built to support and optimize our incredible workforce, but also one that does not allow acceleration of paradigm-shifting advancements in medicine to translate quickly to our real-world care," said Dr. Agarwal. "By initiating this primary care diabetes transformation to increase the use of CGMs in practice, I feel confident that we've identified a scalable model in an ideal setting where together, patients and clinicians are evolving how diabetes is managed. Diabetes affects our communities at high levels--we need to bring advancements like this to our patients quickly to improve their quality of life and outcomes."
One of the challenges with diabetes is that the disease can require 24/7 care due to fluctuation of blood sugar levels, which are impacted by different foods consumed, physical activity, stress and certain medications. Prior to introducing CGMs, clinicians relied on data from finger pricks, which could be painful for patients and only represent a single point in time, while also relying on the patient coming to a clinic visit. CGMs, however, enable doctors and nurses to review data at the visit and remotely over time and see when exactly patients' sugar levels spike or dip, leading to informed conversations about their diabetes and better access to care.
Supported in part by funding from the American Diabetes Association, Drs. Milosavljevic, Agarwal, and Hodgson are implementing a primary care clinic network-wide initiative where doctors are trained in CGM prescribing and management, staff nurses are being trained to apply and activate devices for patients in clinic, and patients not only are being educated on how to use the device and monitor the data, but are also helping to co-design how CGM patient support is built.
"People live with diabetes all day, every day, but when we were seeing these individuals in our clinics, we would just get one number, representing one moment in time," said Sybil J. Hodgson, M.D., assistant vice president of Clinical Services, Montefiore Medical Group. "Having CGMs as a new tool at our disposal, we can ask questions about specific times where we saw blood sugar levels spike and dip, like if they had a certain meal then, or how they were feeling at the time. This has led to a deeper understanding of our patients' lives and is enabling us to make treatment decisions based on a larger amount of actionable data points. This process is not only enabling patients to feel more active in managing their diabetes, it is also transforming how we treat one of the most prominent and persistent diseases seen in primary care."
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Original text here: https://montefioreeinstein.org/news/2026/07/06/montefiore-einstein-investigators-demonstrate-how-new-setting-digital-monitoring-device-can
[Category: Health Care]
Human Rights Watch Issues Commentary: Egypt Prosecutes a Doctor for Alleging Obstetric Violence
NEW YORK, July 7 [Category: International] -- Human Rights Watch issued the following commentary by Amr Magdi, senior researcher in the Middle East and North Africa Division, and Skye Wheeler, senior researcher in the Women's Rights Division:
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Egypt Prosecutes a Doctor for Alleging Obstetric Violence
Suspended Prison Sentence for Doctor Whose Post Stirred Flood of Accounts
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An Egyptian court sentenced doctor and filmmaker Omnia Suwydan on July 4 to a six-months suspended prison sentence and a fine of 20,000 Egyptian pounds (US$408) for alleging obstetric violence at an Alexandria public
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NEW YORK, July 7 [Category: International] -- Human Rights Watch issued the following commentary by Amr Magdi, senior researcher in the Middle East and North Africa Division, and Skye Wheeler, senior researcher in the Women's Rights Division:
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Egypt Prosecutes a Doctor for Alleging Obstetric Violence
Suspended Prison Sentence for Doctor Whose Post Stirred Flood of Accounts
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An Egyptian court sentenced doctor and filmmaker Omnia Suwydan on July 4 to a six-months suspended prison sentence and a fine of 20,000 Egyptian pounds (US$408) for alleging obstetric violence at an Alexandria publichospital.
Obstetric violence, which includes physical and emotional abuse of pregnant people seeking sexual and reproductive health services, is a widespread but broadly ignored form of gender-based violence.
Suwydan wrote a Facebook post on June 15 describing degrading, violent, and potentially criminal treatment of women seeking reproductive health care, including physical and verbal abuse, sexual abuse, refusal of care, and medical negligence that she said she witnessed at the government hospital. She made allegations of abuses against women that are impossible to ignore.
Suwydan's post was met with a powerful response online: Women, doctors, and advocates described humiliation, coercion, neglect, and abuse during childbirth and gynecological care in Egyptian hospitals, alleging unethical practices with little or no consequences. The flood of stories suggests that obstetric violence in Egypt is not isolated bad behavior, but a systemic problem shaped by power imbalances; particularly for lower income patients seeking free government services who face class discrimination, weak oversight, and normalization of women's suffering.
Security forces arrested Suwydan at her home in Damanhour on June 16, just hours after the post was widely shared.
Prosecutors charged Suwydan with "spreading false news" and misusing a social media account before releasing her the next day on bail of 20,000 Egyptian pounds ($408), her lawyers said. For these minor offenses, authorities referred her to trial before a criminal court, which sentenced her on July 4, after two short hearings.
Suwydan's allegations should trigger a serious, independent investigation focused on patient safety. But authorities turned their machinery against the messenger. Prosecuting Suwydan sends a chilling message to women patients, survivors, doctors, nurses, and witnesses: stay silent, or risk punishment. It follows a pattern in Egypt of authorities targeting those who speak out, including a prominent economist and family members of detainees.
Egyptian authorities should immediately drop the charges against Suwydan and end the use of abusive prosecutions to punish critical speech. They should treat Suwydan and other women's accounts as an urgent public health and human rights emergency, not reputational damage to be policed.
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Original text here: https://www.hrw.org/news/2026/07/06/egypt-prosecutes-a-doctor-for-alleging-obstetric-violence
Human Rights Watch Issues Commentary to African Arguments: African States Shouldn't Help the US Endanger Refugees
NEW YORK, July 7 [Category: International] -- Human Rights Watch issued the following commentary by Lauren Seibert, senior researcher in the Refugee and Migrant Rights Division, to African Arguments:
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African States Shouldn't Help the US Endanger Refugees
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Disembarking at an airport in Cameroon a few weeks ago, two Cameroonian women shook with fear. They had fled their country over a year before to seek asylum in the United States, but were summarily deported from the US to Equatorial Guinea, whose authorities sent them back to Cameroon. Both women had been previously granted 'withholding
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NEW YORK, July 7 [Category: International] -- Human Rights Watch issued the following commentary by Lauren Seibert, senior researcher in the Refugee and Migrant Rights Division, to African Arguments:
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African States Shouldn't Help the US Endanger Refugees
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Disembarking at an airport in Cameroon a few weeks ago, two Cameroonian women shook with fear. They had fled their country over a year before to seek asylum in the United States, but were summarily deported from the US to Equatorial Guinea, whose authorities sent them back to Cameroon. Both women had been previously granted 'withholdingof removal' by US immigration judges based on the likelihood they would be persecuted in Cameroon.
'We were very scared,' one of the women told me. 'The day before we left Equatorial Guinea, a commissioner told us we were leaving for Cameroon... We were shocked. We tried to plead with them that we cannot go back.' When she asked an official about asylum in Equatorial Guinea, 'He just laughed and said, 'There is nothing like that here. The only option you have here is going back to your country.'
By deporting these Cameroonian refugees, Equatorial Guinea violated the international law prohibition of refoulement - the forced return of a refugee to the risk of persecution, a cornerstone of both the 1951 UN and 1969 African refugee conventions. Equatorial Guinea is bound by both treaties, even though it has no national asylum system in place.
The two Cameroonian women were among a reported 32 people of multiple nationalities sent from the US to Equatorial Guinea on three flights since November under a third-country transfer agreement, in exchange for $7.5 million. Even before repatriating the two Cameroonians, according to rights groups, authorities in Equatoria Guinea had returned at least 17 other people to their countries, informing many that asylum was not available to them.
On May 13, UN human rights experts and the African Commission on Human and People's Rights highlighted the 'risk of refoulement' and called on Equatorial Guinea 'to immediately suspend any deportations of individuals at risk.' Equatoguinean authorities ignored the appeal. A group of nongovernmental groups have filed a case against Equatorial Guinea with the African Commission.
This is happening because the Trump administration has sent over 200 people to at least 10 African states so far under various third-country transfer agreements - often in exchange for money, cloaked in secrecy, and carried out without due process or rights guarantees. While most deportees have been African, several dozen were from Latin America, the Middle East, Asia, and Europe.
Dozens of asylum seekers have been among those transferred, part of the Trump administration's attempts to eviscerate asylum in the US and ' indirectly force asylum seekers back to their home countries,' US immigration lawyers say. The asylum claims of some were unfairly blocked from consideration, known as pretermission, based on the often-fictitious notion that they would have fair hearings in third countries. Others were deemed ineligible for asylum in the US due to harsh regulations - such as the bar on asylum for those crossing the southern border irregularly - but had US court-ordered protections against deportation to their home countries due to fears of persecution or torture. The Trump administration circumvented these protections by sending people to the third countries.
Arriving in Cameroon, the two women deported from the US and Equatorial Guinea managed to negotiate their way out of the airport. But once outside, one woman said, 'Some police officers stopped in front of us and... said, "You are the girls deported from America".' She froze, but her companion managed to talk their way out of arrest once again. The two have now fled to another country, where they are in hiding.
These women should never have been put in this dangerous situation. Human Rights Watch has previously documented how dozens of Cameroonians asylum seekers deported during the first Trump administration suffered arbitrary detention, torture, rape, and other abuse by Cameroonian authorities post-return. Risks there are also high for third-country nationals sent to Cameroon.
Equatorial Guinea is not the only country guilty of refoulement. Ghana and Cameroon have also forced or coerced the returns of some asylum seekers they received from the US. Both sent people who feared persecution based on sexual orientation back to countries - Gambia and Morocco - that criminalize same-sex relations. The Democratic Republic of the Congo in April accepted 15 Latin Americans deported by the US, of whom at least 11 have returned to their home countries, including Colombia and Peru. All had US court-ordered protections against return. While Congo did not directly force them back, the coercive circumstances they were under make their 'voluntary repatriation' suspect.
The US Trump administration should start treating human beings with dignity, follow its own laws, and restore access to asylum. African states should stop accepting third-country nationals from the US and should follow the guidance of the African Commission, which expressed concern with these transfers and laid out states' obligations. Above all, states must protect asylum seekers and refugees from refoulement.
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View commentary in African Arguments here: https://africanarguments.org/2026/07/african-states-shouldnt-help-the-us-endanger-refugees/
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URL: African Arguments
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Original text here: https://www.hrw.org/news/2026/07/06/african-states-shouldnt-help-the-us-endanger-refugees
AHRC Calls for the Immediate Release of Dr. Hussam Abu Safiya
DEARBORN, Michigan, July 7 -- The American Human Rights Council issued the following news release:
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AHRC Calls for the Immediate Release of Dr. Hussam Abu Safiya
The American Human Rights Council (AHRC-USA) joins all peace-loving people and the global human rights community in calling for the immediate release of Dr. Hussam Abu Safiya, Director of Kamal Adwan Hospital in Gaza.
According to multiple credible sources, including Dr. Abu Safiya's legal team, his health has drastically deteriorated, and he faces imminent danger, including the risk of death while in Israeli detention. His legal
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DEARBORN, Michigan, July 7 -- The American Human Rights Council issued the following news release:
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AHRC Calls for the Immediate Release of Dr. Hussam Abu Safiya
The American Human Rights Council (AHRC-USA) joins all peace-loving people and the global human rights community in calling for the immediate release of Dr. Hussam Abu Safiya, Director of Kamal Adwan Hospital in Gaza.
According to multiple credible sources, including Dr. Abu Safiya's legal team, his health has drastically deteriorated, and he faces imminent danger, including the risk of death while in Israeli detention. His legalrepresentatives are urgently appealing to the international community and all people of conscience to intervene without delay to compel Israel to release him before it is too late.
Dr. Hussam Abu Safiya is a physician who consistently places his patients' lives above his own safety. He refused to abandon the hospital or leave the wounded behind despite repeated Israeli demands and threats. He continued his humanitarian mission under bombardment, siege, and near-total depletion of medical supplies.
Throughout the crisis, Dr. Abu Safiya repeatedly appealed to the international community to protect hospitals, medical staff, and patients from military operations. His calls were grounded in international humanitarian law and the universal principle that medical facilities must never be targets of war.
Despite the bombardment of Kamal Adwan Hospital, Dr. Abu Safiya remained at his post--even after being injured himself, even after his son Idris was wounded, and even after the killing of his son Ibrahim, whom he buried with his own hands inside the hospital. His courage and devotion to human life embody the highest ideals of the medical profession.
Since his arrest on December 27, 2024, Dr. Abu Safiya has reportedly been subjected to torture, abuse, and prolonged solitary confinement. His health continues to deteriorate, and he has been denied communication with his family and legal team. Reports indicate he was recently transferred to an isolated cell, raising further alarm about his safety and well-being.
Dr. Abu Safiya's case is not isolated--several other doctors and medical personnel have also been arrested by Israeli forces, deepening the humanitarian crisis and undermining the protection owed to medical workers under international law.
AHRC urgently calls upon international medical associations, physicians' unions, humanitarian organizations, and global civil society to join in efforts to demand his immediate release. The global medical community has a moral obligation to defend colleagues who are persecuted for fulfilling their humanitarian duties. Silence or delay may cost Dr. Abu Safiya his life. His release is a moral, legal, and humanitarian imperative.
"We urge everyone to take a stand and push for the good doctor's release," said Imad Hamad, AHRC Executive Director. "This is not about politics; this is about medicine and human rights," added Hamad.
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AHRC Mission:
The American Human Rights Council (AHRC) is dedicated to defending and protecting human rights as outlined in the U.S. Constitution and the United Nations 1948 Universal Declaration of Human Rights (UDHR). The AHRC was formed to protect these rights and advocate for anyone whose rights are being violated or denied. To that end, the AHRC will build a tenacious, objective, and carefully guided advocacy program that will serve to defend individual human rights, whenever and wherever they are being infringed upon. NGO in Consultative Status with the Economic & Social Council (ECOSOC)-United Nations
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AHRC News & Views
Media & Information: (313) 9143251 or via email at: Info@ahrcusa.org
NGO in Consultative Status with the Economic and Social Council (ECOSOC) of the United Nations
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Original text here: https://ahrcusa.org/ahrc-calls-for-the-immediate-release-of-dr-hussam-abu-safiya/
[Category: Sociological]
4Life Village in the Philippines
SALT LAKE CITY, Utah, July 7 -- 4Life Research issued the following news release:
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4Life Village in the Philippines
Manila, Philippines - In a collaboration between Foundation 4Life and Gawad Kalinga, more than 20 4Life employees and 70 Affiliate leaders visited the 4Life Village to meet residents and donate food supplies. This service project benefited 100 people in numerous families.
Gawad Kalinga (GK) is a Filipino non-government organization dedicated to alleviating poverty. In Tagalog, the phrase means, "to give care." The non-profit's goal is to transform former slums and disaster-stricken
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SALT LAKE CITY, Utah, July 7 -- 4Life Research issued the following news release:
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4Life Village in the Philippines
Manila, Philippines - In a collaboration between Foundation 4Life and Gawad Kalinga, more than 20 4Life employees and 70 Affiliate leaders visited the 4Life Village to meet residents and donate food supplies. This service project benefited 100 people in numerous families.
Gawad Kalinga (GK) is a Filipino non-government organization dedicated to alleviating poverty. In Tagalog, the phrase means, "to give care." The non-profit's goal is to transform former slums and disaster-strickenareas into sustainable communities through partnerships, volunteerism, and values-driven community development.
Foundation 4Life's mission is to alleviate childhood poverty wherever 4Life conducts business around the world. The 4Life Village was born from a partnership between Foundation 4Life and Gawad Kalinga when, in 2024, 4Life contributed $100,000 for 20 sustainable homes--including electricity and supplies.
Visitors to the 4Life Village included 4Life Founder and Chairman of the Board David Lisonbee, President and CEO Danny Lee, Chief Scientific Officer Dr. David Vollmer, 4Life Philippines General Manager Eileen Tan-Dario, 4Life Philippines Business Development Director Javes Manslungan Jr., and Director of Foundation 4Life Jenna Lisonbee. Village residents honored these and other volunteers with a boodle lunch, which is slang for a Filipino feast. The children of the 4Life Village presented 4Life executives with sunflowers to show their gratitude.
Tan-Dario: "At 4Life Philippines, our commitment to serve goes beyond business. We actively strive to uplift communities through Foundation 4Life initiatives that embody one of our core values: Service. We endeavor to exemplify the legacy of Foundation 4Life Founder, Bianca Lisonbee, by passionately serving and positively impacting families in need through service projects."
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4Life, The Immune System Company(R), and the first to bring transfer factor research to market, has offices in dozens of countries to serve the company's worldwide customers.
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Original text here: https://www.4life.com/corp/news/details/4life-village-in-the-philippines/5403
[Category: Health Care]
'What Happens to My Child When I Die?' The Crisis Facing Parents of Adults With Autism
FRANKLIN LAKES, New Jersey, July 7 -- Children's Health Defense, an organization that says it restores and protects the health of children by eliminating exposures to environmental toxins, issued the following news:
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'What Happens to My Child When I Die?' The Crisis Facing Parents of Adults With Autism
As autism rates continue to soar, parents of an adult child with severe autism are faced with few good options for housing and long-term care for their child. "Their parents are getting old and starting to pass from the scene, and the taxpayers are going to start to learn how much of a subsidy
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FRANKLIN LAKES, New Jersey, July 7 -- Children's Health Defense, an organization that says it restores and protects the health of children by eliminating exposures to environmental toxins, issued the following news:
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'What Happens to My Child When I Die?' The Crisis Facing Parents of Adults With Autism
As autism rates continue to soar, parents of an adult child with severe autism are faced with few good options for housing and long-term care for their child. "Their parents are getting old and starting to pass from the scene, and the taxpayers are going to start to learn how much of a subsidythose parents have been providing over the years," said John Gilmore, father of an adult autistic son and member of the Interagency Autism Coordinating Committee.
by Suzanne Burdick, Ph.D.
In a world where autism rates are continuing to climb out of control, an increasing number of aging parents of children with severe autism worry about who will care for their child and where their adult child will live once they are gone.
"It is a crisis for many individuals every day," John Gilmore, the father of an adult autistic son, told The Defender. "In many places, even states with relatively good services, housing is only provided in emergency situations, such as when a single parent who provides care dies."
Gilmore is a member of the Interagency Autism Coordinating Committee (IACC), a committee launched in January by U.S. Health Secretary Robert F. Kennedy Jr. The committee advises the federal government on issues related to autism.
Housing for individuals with severe autism is high on the committee's priority list, Gilmore said. "It has taken longer than we expected to get the IACC moving, but it is now, and housing is probably the most important non-medical issue we are considering."
At its first meeting in April, IACC recommended that federal agencies adopt the term "profound autism" to refer to people with autism age 8 and older who have little or no speech, require continuous or near-continuous supervision for safety, and need substantial help for daily living activities.
The IACC said it hopes that the adoption of one standardized term will pave the way for research and policies that benefit this subset of individuals with autism.
Roughly 27% of kids diagnosed with autism have profound autism, according to the Centers for Disease Control and Prevention (CDC).
Jill Escher, president of the National Council on Severe Autism and a mother of two adults with nonverbal profound autism, told The Defender that federal policy has historically failed to provide good-quality housing for people like her sons.
"It's a tremendous crisis that continues to grow more serious year after year as the population of young adults ages up and as the parents become more infirm and pass away," Escher said.
Only 12% of parents and caregivers of individuals with profound autism have a concrete plan for when they can no longer provide care for their child, according to a nationwide survey the National Council on Severe Autism conducted last year.
The survey, taken by nearly 1,300 parents and caregivers, also revealed that 65% of caregivers were ages 45 to 64.
Nearly half said they are still figuring out a plan for when they can no longer care for their child, and nearly a third had no plan at all.
'No one else cares about them in the way that I do'
Those numbers come as no surprise to Brian Hooker, Ph.D., chief scientific officer of Children's Health Defense (CHD). Hooker and his wife's only child is an adult with profound autism who requires 24/7 care.
"We don't know what our actual plan will be for him," Hooker said in a recent CHD.TV interview with Dr. Andrew Wakefield. "We are working that out with fear and trembling, trying to figure out what the best trajectory for my son will be, you know, besides my wife and I living until we're 130, 140 years old."
Roughly 1 in 31 U.S. kids have an autism diagnosis, continuing a decades-long increase, according to the most recent CDC data.
Securing quality care and housing for the increasing number of adult children with autism is something that has never been fully addressed, Wakefield said.
That's why Wakefield wrote "The Bequest," his latest book, which launched June 26. The book, which Wakefield plans to make into a film, centers on the dilemma parents of a child with autism face when it comes to ensuring that their child is well cared for and loved after the parents' death.
Wakefield told Hooker:
"This is one of the issues that plagues millions of parents across the country and around the world every night. Keeps them awake. What happens to my child when I die?
"Because when I'm no longer here, no one else cares about them in the way that I do, no one understands them, and indeed, no one loves them. And so what will happen?"
Parents of children with profound autism face incredible stress.
The divorce rate among parents of a child with autism is about 80%, according to a 2023 Psychology Today report. That's more than double the country's overall divorce rate, according to the CDC's most recent data.
Some states, including California, provide parents with assistance, including in-home support services or compensating parents for caregiving, said Hooker, a California resident.
But those services tend to be lacking in states with little to no state income tax, said Escher, who also lives in California. "Texas offers nothing," she said.
15-year waitlist now typical for group homes
Part of what makes California unique is the Lanterman Act, a state law that provides people with developmental disabilities the right to services and support.
Under the law, the state runs regional centers that support over 222,000 people diagnosed with autism, including around 47,400 adults age 22 and up, according to Jennifer Ayari, a public information officer for California's Department of Developmental Services.
"In some cases," Ayari told The Defender, "regional centers may provide specialized housing and residential support services to people with qualifying disabilities." But those services are made available only "after other sources of services and supports have been exhausted," she said.
Group homes are the typical alternative when parents or extended family are not able to care for the adult child -- but they may have long waitlists.
Gilmore, who lives in New York, said a friend of his was just notified after waiting 15 years that a group home spot was finally available for the friend's adult son with autism. "Waiting 15 years is typical now," Gilmore said.
California's Department of Developmental Services runs nearly 641 group homes with another 48 in development, Ayari said.
Still, Hooker said that number is "nowhere near sufficient" to meet the growing needs of this population.
Plus, California's regional centers, which make the recommendations for where a person with profound autism should reside, typically favor at-home placements and recommend group homes only in cases of emergency.
Group homes may not meet needs of adults with profound autism
Even when adults with profound autism manage to get into a group home, that is no guarantee that the place will be a safe and nurturing environment for them, Escher said.
"A lot of these group homes are not set up for emergency situations, and that becomes very, very difficult," Hooker said.
Escher said that many group homes are influenced by federal policy that is "very drenched in ideology and wishful thinking about disability."
The ideology assumes that people with disabilities, including those with profound autism, should live in the community. That typically means that group homes are placed in urban neighborhoods without a lot of yard or nature, she said.
Most group homes lack specialized amenities -- including fences, gates, sensory equipment, swings, trampolines, hot tubs or pools -- that people with profound autism need to keep them safe and happy.
Even though it's likely that adults with autism would thrive in more rural, therapeutic environments, it's nearly impossible for residents of some states to get that kind of housing and care for their child.
That's the case in Pennsylvania, Escher said, which has a rule requiring group home placements for adults with profound autism. "They are not open to other alternatives."
Gilmore said he thinks the housing situation for adults with profound autism is likely going to get worse before it gets better.
"The tsunami of young children diagnosed with autism in the 90s are now adults," he said. "Their parents are getting old and starting to pass from the scene, and the taxpayers are going to start to learn how much of a subsidy those parents have been providing over the years."
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Suzanne Burdick, Ph.D., is a senior reporter for The Defender based in Austin, Texas.
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Original text here: https://childrenshealthdefense.org/defender/what-happens-to-my-child-when-i-die-crisis-facing-parents-adults-autism/
[Category: Health Care]
