COVID-19
The New Reality

ALYN’s children must advance in their rehabilitation

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Necessity is the mother of innovation
Necessity is the mother of innovation
Necessity is the mother of innovation
Necessity is the mother of innovation
Necessity is the mother of innovation

Globally, the number of people contracting COVID-19 is still rising daily, with now more than 2.3 million confirmed infections world-wide and more than 160,000 deaths. The world’s best health care systems are being challenged. At ALYN Hospital, we have proven to ourselves that we have the ability to adapt – and to adapt quickly – to this “new normal” through drawing on our innovative thinking skills to maximize the number of children we continue to treat while keeping all of our vulnerable patients and staff safe from the threat of COVID-19, without compromise. As the saying goes, “necessity is the mother of innovation.”

A recent visit of the controller from the Supervision and Training Staff of the Home Front Command and The Ministry of Health Infection Control Center visiting ALYN were blown away by the forward thinking and planning, the detailed implementation and the well thought-out protocols. “We have been to many facilities in the last few weeks and have never seen anything like this,” said the chief Medical Officer.

 

There is still a cloud of uncertainty around how COVID-19 affects healthy children in general, but the general consensus is that we should be very worried about children who are immunocompromised or have a chronic medical condition, in particular children with lung disease who require the use of a ventilator. If one of our respiratory patients should contract COVID-19, we know that it will be absolutely life-threatening.

 

We are committed to doing everything in our power to protect the children of ALYN Hospital from becoming a part of the statistics.

 

In the articles on this webpage, you are invited to read about how the Corona Crisis is impacting ALYN Hospital and about some of the steps we have taken to respond to the crisis, including initiating remote rehabilitation therapy so that children with disabilities can continue to receive treatment while staying safe at home.

 

The investments we have made over many years in developing our staff, improving our infrastructure and refining our protocols have been put to the test over the last few weeks, and we are proud of how we have risen to the multiplicity of challenges that the Corona Crisis has presented us with.

 

There is a global shortage of ventilators, the cost of medical masks and other protective gear has climbed sharply, and deliveries of supplies have been increasingly delayed. Our skillful purchasing department has been able to secure most of the necessary supplies – after intense negotiations on price – from every possible resource, including the Ministry of Health and suppliers within Israel and internationally. Our supplies department is constantly checking our inventory and rationing every mask, pair of gloves and robe to ensure that not a single item is wasted.

 

Our adept veteran medical and nursing staff worked quickly to develop an array of new protocols to prevent the introduction and spread of COVID-19 at ALYN Hospital, and our courageous management made the bold decision to relocate the entire Respiratory Rehabilitation Department, which was on the third floor of the Hospital, to the newly constructed Restricted Respiratory Ward on the second floor.

 

The expertise of our operations and computer staff truly came to the fore when they were faced with having to build and install the entire complex vital statistics monitoring system in the relocated Respiratory Rehabilitation Department in-house, since the company that produces such systems had put all of their staff on unpaid leave. Even the elevators at ALYN Hospital had to be re-programmed, with designated second-floor only or third-floor only access for the kitchen, laundry, supplies and maintenance staff from the first floor to either section of the Hospital.

 

It is not an exaggeration to say that ALYN Hospital has been split in two, with each section of the Hospital now having its own medical, nursing, therapeutic and administrative staff that have no contact with the staff of the other section except through email, phone or video-conference. The successful relocation of the Respiratory Rehabilitation Department and construction of the Restricted Respiratory Ward required tremendous cooperation between all of our staff at all levels, as well as massive financial resources.

 

We have been moved by the outpouring of support that we have received from our friends and supporters around the world. We know that many of you have been affected personally by this crisis, and that makes your support – whether in words or in donations – so very meaningful for us. We need your support now more than ever to help us get through these critical months where donations will need to make up the majority of our income, and any amount you can give now will help.

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“One of the most difficult cases we have ever seen
“One of the most difficult cases we have ever seen.” Dr. Maurit Beeri and the family of patient Shira Roth interviewed on Israeli news

In the spring of 2018, Shira Roth and her mother were in a very serious road accident in which Shira sustained a severe brain injury and was in a coma for five months. With the untiring help of the staff of ALYN Hospital and Shira’s incredible family, Shira woke up from her coma, but to an uncertain future. Shira, her family and Dr. Maurit Beeri, Director General of ALYN Hospital, were recently interviewed on a major Israeli news broadcast about Shira’s incredible journey, and how she has been benefiting from ALYN Hospital’s remote rehabilitation during the corona lockdown.

“Honestly, it was one of the most difficult cases that we have ever seen,” said Dr. Maurit Beeri when describing Shira’s condition when she arrived to ALYN Hospital. “For a very long period of time, we dedicated ourselves, along with her amazing family, to trying to establish a connection with her. For weeks and months there was no progress, Shira was in a bad condition and suffering a lot. But the medical staff didn’t give up, and especially her family did not give up. Shira listened, and opened her eyes, and since then she continues to amaze us.”
 
Over the next year, Shira underwent intensive respiratory, occupational, physical and speech therapy while hospitalized at ALYN Hospital, and she continued to surprise all with her incredible achievements. Slowly but surely, Shira began to show signs of understanding what was going on around her and being able to communicate first through slight gestures and then through vocalizing, all very reassuring signs for her doctors.
 
Dr. Beeri explained, “The more severe the brain injury, the longer the process of returning to a state of consciousness takes – and it is all statistics in medicine. We study the data, we work according to research and knowledge, but we also know that medicine is never perfect. With children, we always have hope because we know that there is brain plasticity and there is still a developmental process that the brain is going through, enabling it to continue to change and grow. Shira has stretched our boundaries.”
 
ALYN Hospital treats dozens of children with brain injuries each year, and has a specialized Brain Injury Clinic that offers continued treatment for children who have completed their intensive rehabilitation period. Like Shira, many of these children have sustained brain injuries due to road accidents, but there are a number of ways that children can acquire a brain injury: a fall from a height, the removal of a brain tumor, a blunt head injury from a heavy object or a sudden hemorrhage are some of the more common causes of brain injury in children seen at ALYN Hospital.
 
When COVID-19 hit Israel, Shira had already made incredible strides in her rehabilitation on all levels. One of the challenges for the doctors and therapists of ALYN Hospital during the past two months of the corona crisis was how to ensure the continuation of rehabilitation treatment for children like Shira – children with complex medical conditions for whom any delay in rehabilitation would have negative ramifications in the long-term. Within an extremely short period of time, remote rehabilitation treatments were up and running for all therapeutic departments of ALYN Hospital, and thousands of remote treatments have taken place since.
 
Amir Roth, Shira’s father, said, “We chose to be interviewed because of our immense gratitude to ALYN Hospital in general, and especially during this period, where they simply ‘invented’ Zoom therapy out of nothing.”
 
Asked by the interviewers where she sees herself in one year from now, Shira answered, “That I’ll be able to walk already. I pray to walk.”

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פרויקט התזמורת המשולבת
Music Together: The children of ALYN Hospital and local Jerusalem schools make music together in an inclusive orchestra program

For the past two years the young musicians of the Music Together inclusive orchestra held regular rehearsals at ALYN Hospital. Sadly, the social distancing regulations of the corona crisis abruptly disrupted their activities, including their end-of-year performance of the song “Waiting” by Israeli star Rita. The singer sent a special video message of hope to the children, and channel 12 news shared the story with the Israeli public.

The Music Together orchestra project brings together children with special needs and children from local community schools for a fun and meaningful experience, while teaching acceptance through the bonding power of music. The project participants include children from ALYN Hospital’s in-house SHACHAR Rehabilitation Educational Medical Day Care Center school (largely children with congenital or acquired physical disabilities who need medical supervision and an ongoing, daily rehabilitation program) and children with normative physical development from local schools.

 

For the young participants from local schools, the program helps to develop the next generation of socially accepting and sensitive Israeli citizens who make inclusivity a priority.

 

For the children of ALYN Hospital, the project is especially meaningful, offering an avenue for the natural and deep need to express oneself through music. Children very instinctively sing and create rhythm while playing, and as they get older seek to express themselves through music. However, children with physical disabilities have difficulty using traditional instruments that demand quick hands, extensive movement, balance while sitting or standing, and eye-hand coordination. Often times, this leaves children with disabilities frustrated. Therapy through music is a critical developmental tool. For children, the greatest challenge with any type of therapy, is to make it a fun and meaningful part of everyday life – accomplished by the Music Together program.

 

Accessible musical instruments for ALYN Hospital school children
The participation of ALYN Hospital’s children in the Music Together joint orchestra program created a need for accessible acoustic instruments. For the most part, today, only accessible electric musical instruments are readily available. However, with innovation and persistence, ALYN Hospital, through PELE, is both adapting available musical instruments as well as creating original, accessible instruments that enable every child at ALYN Hospital to play an instrument independently.

 

Before this incredible project was disrupted by the corona crisis, the Music Together orchestra held ongoing joint rehearsals at ALYN Hospital.

 

The children have not been able to meet for many weeks and miss each other dearly. They are eagerly waiting to see each other again very soon to laugh, make music and play their favorite Rita songs.

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Corona expenses to top $1 million in March alone

The COVID-19 pandemic has shaken health care systems around the world to their very core. At ALYN Hospital, none are more susceptible to this infectious disease than children with respiratory complications. Our daily routine has been completely disrupted as we have implemented emergency measures to keep our most vulnerable patients, and the staff that treats them, safe.

Watch update from ALYN Hospital Director General Dr. Maurit Beeri

Our primary concern is safeguarding our children who cannot breathe independently and therefore require respirators. For these children, contracting a respiratory illness caused by COVID-19, is life-threatening. To minimize every possible chance of infection, our staff has worked around the clock to implement new medical protocols and to construct a temporary restricted wing for all respiratory patients within the Hospital.

 

At the same time, we continue to treat our non-respiratory, yet still critical, patients while taking every necessary precaution. Children with severe brain injuries or devastating neurological diseases, those recovering from complex orthopedic procedures or any number of other severe medical conditions, must continue to receive the rehabilitation that is vital to their recovery.

 

Outside the walls of ALYN Hospital, hundreds of our patients have begun rehabilitation treatments remotely. With the majority of our administrative staff on leave or working from home, their offices and computers have been equipped for use by our physical, occupational and speech therapists for remote therapeutic sessions. Our psychologists are working remotely to provide crucial support to the embattled parents of our patients, and the response has been overwhelmingly positive.

 

With the COVID-19 pandemic far from over, we are doing everything in our power to continue to care for and protect the most vulnerable children inside of ALYN Hospital, and to provide remote treatment for those for whom it is safest to stay home.

 

However, these efforts are not without cost. ALYN Hospital is a non-profit facility that does not receive any automatic government funding. Therefore, we heavily depend on the generosity of private donors to ensure that all of our patients continue to receive the best quality of care possible.

 

DUE TO THE IMPACT OF THE CORONA CRISIS, WE NEED TO RAISE MORE THAN $1,000,000 TO COVER THE EXPENSES OF THIS MONTH ALONE.

 

Our resilience – our ability to overcome this challenge and to COME OUT OF THIS CRISIS EVEN STRONGER – is dependent on our dedicated staff and on the financial support of our friends and supporters world-wide whom we desperately need to stand by our side throughout this crisis.

 

If you can give today, please do. If you can make a commitment to give in the future, please do. If due to the current situation, you can only express your support in words, we want to hear from you.

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Physical therapy
Physical therapy
Physical therapy
Carrying on: Using remote rehabilitation to continue physical therapy treatment

Over the past several weeks, hundreds of patients were informed that they will be unable to receive treatment in ALYN Hospital’s Outpatient Clinics due to the Ministry of Health’s regulations for the COVID-19 lock-down. In response, therapeutic treatments offered in ALYN’s various multidisciplinary Outpatient Clinics are now taking place using remote rehabilitation to continue to serve children with respiratory illnesses, neuromuscular diseases, brain injuries, cerebral palsy, and feeding difficulties, among other conditions.

 

In addition, many of the patients in our Day Hospitalization Department have had their daily rehabilitation treatments at ALYN Hospital put on hold to avoid risk of infection, interrupting their crucial intensive rehabilitation program, including physical therapy, occupational therapy, and other treatments.

 

Imagine your child was recovering from an operation on their leg. The surgical aspect of the treatment is complete, but the subsequent rehabilitation process is no less integral to their successful recovery, and they have a long and arduous road ahead. Similarly, children seeking treatment at ALYN for illness, injury, or other trauma, must continue their daily rehabilitation program in order to avoid long-term disability and successfully reintegrate with their families and into society.

 

Throughout the current COVID-19 crisis, during which people are coping with many different challenges, ALYN Hospital is committed to continue to support those whose most significant challenge is the continuity of their medical rehabilitation treatments, despite the restrictions. Remote rehabilitation through video-conferencing software is providing the solution to this challenge.

 

How does remote rehabiliation work?

 

“We’ve been discussing remote rehabilitation for quite some time,” shares Naomi Gefen, Deputy Director General of Clinical Services, “and there was significant concern pertaining to the effectiveness of these treatments. Patient and therapist are in separate environments, removing the therapist’s ability to physically direct the patients’ movements in order to ensure that they are performing the exercises properly.” But the sudden lock-down has impelled the staff to jump right into the freezing waters and swim.

The most significant disadvantage of remote treatments is the lack of touch, a tool relied on heavily by physical therapists to correct patients’ movements. But under the circumstances, there have been major advantages as well.

 

Dozens of physical therapy treatment sessions have already taken place using the video conferencing app Zoom, and it appears that video treatments are bringing new, unexpected advantages to the surface. One of the most noticeable benefits is the ability to treat a patient in their natural environment, which the physical therapists leverage during treatment.

 

Matan Ravid, a physical therapist at ALYN, explained: “Many times, we work on different complex exercises with the children in the clinic, but then we have no way to know if or how they are practicing at home. Over the past few weeks, I’ve been able to see my patients in their homes, in their personal environments. I can estimate distances between rooms and identify furniture that can serve as alternative ‘exercise equipment,’ giving me more options for exercises.”

 

Physical therapy treatments differ from each other depending on treatment goals, the patient’s age, and the patients’ abilities. Despite that, the staff are noticing benefits to types of treatments all across the spectrum.

 

One of Matan’s patients is Michael, 17, who is undergoing physical therapy after a surgery on his leg following a traffic accident. “In Michael’s case, our treatment goals are focused on strengthening his muscles, so we go over their entire home together and find items that are the right weight to use as a replacement for the equipment he would use at ALYN,” says Matan.

 

Another patient, Michal, suffers from complex regional pain syndrome (CRPS), a long-term chronic pain condition characterized by a heightened pain response to a physical trauma due to a pain regulation disorder in the central nervous system. Michal’s current treatment calls for taking extended walks with very slow steps. “In online treatments, I can see the distance between two rooms and use it to build a series of repeated daily exercises for her practice until the next session. A big part of these types of treatments are verbal guidance and active listening — and Zoom provides answers to those needs,” Matan explains.

 

For some children, like Adam, 7, touch is not a significant factor in their treatment. Their treatment requires them to watch and learn because their treatment goals are to improve skills and to return to function after trauma or illness. “Holding these treatments at home is ideal, as it offers a great opportunity to recruit their entire familiar environment into exercises and practice,” says Matan.

 

Dozens of our patients have been able to continue treatments remotely, including physical therapy, music, art, classes, and more.

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Warm home
Warm home
11 children on ventilators experience life in isolation at ALYN Hospital

Bayit Cham is ALYN Hospital’s group home for children on ventilators whose families, primarily for socioeconomic reasons, were unable to take them home at the end of their rehabilitation period. Until a few weeks ago, the children spent their days going to school either at ALYN Hospital or in the community, participating in youth movements, going out to see movies, and generally experiencing “normal” childhood to the greatest extent possible. We asked the Director of Bayit Cham, Nissim Alfandari, to tell us how life has changed due to the coronavirus outbreak:

How are the children of Bayit Cham coping with the limitations of “social distancing?”

 

“Ironically, one of the goals of Bayit Cham is to expose the children to all of the experiences of childhood that is developmentally appropriate for their age – and at this point in time, all of the children of Israel are experiencing ‘social distancing.’ Just like any other family, one of our biggest challenges is to provide activities to keep them growing and developing intellectually and socially here inside of Bayit Cham.

 

But we also have a very different challenge that is specific to our children, all of whom are on ventilators which makes them extremely vulnerable to the coronavirus. I don’t want to think about what could happen if we had coronavirus inside Bayit Cham. So we are taking every precaution to make sure that we keep it out, and this is a very big challenge for the staff and also for the children. It is very difficult to keep the children separate from each other within Bayit Cham – they are almost like brothers and sisters to each other.”

 

What are you doing to keep COVID-19 out of Bayit Cham?
“First, there is what the Hospital has done to keep the patients and staff safe as a whole. The management of the hospital invested a lot to keep us secure and protected, so the virus doesn’t get in. The Hospital has essentially been split into two sections with completely separate staffs that do not interact with each other – we do not even come through the same entrances into the building. The Hospital opened a respiratory ward, of which Bayit Cham is now a part.
We try to interrupt the children’s lives as little as possible, but the staff has had to make many changes. My office was turned into a makeshift isolation room.

 

We changed the way we work – we only come into the hospital once a day, change into clean clothes, put on a robe and mask, and use hand sanitizer even before coming inside the respiratory ward, and then we can’t leave the whole day. We do not go out of Bayit Cham to have lunch or go outside for a break in the garden.
In the first few days it was very difficult, because our staff really are like a family and we feel very comfortable and relaxed here. We have worked together for many years and we love each other, so it was difficult to get used to the regulations that keep us safe, but distant. We help each other by talking a lot about what is happening in Bayit Cham and in our lives, so we share our experience and stick together through this difficult time.”
With so many limitations to activities and the children being so vulnerable to infection, what do you do to ensure they continue to be active?

 

“Children are always resilient in general. In Bayit Cham it is even more difficult since the children are respirated and have a lot of motor limitations, so we need to find ways to keep them occupied in Bayit Cham – and we do it very well. We have National Service volunteers, we play board games, we draw a lot, we do cooking activities, and we also watch TV from time to time. The children continue to get their therapies from the ALYN therapists through video-conferencing.
In this regard, the children in Bayit Cham are actually experiencing the coronavirus like many other children in the world, and because our staff and volunteers are confined together inside of Bayit Cham, the children are receiving even more special attention and activities.

 

We fill their time with as many fun activities and things to do as possible, so we don’t dwell on the fact that we are restricted. We cannot take them outside of the building, but we have a wonderful view of nature from our windows. The children aren’t going to school, but we help them to join their classes and talk to their friends through video-conferencing. We can’t go to museums or the movies, but we can learn about the world on the internet.”
What do the children say about how they are feeling?

 

“At this point, their mood is very good and we are working hard to keep them happy.”
Turning to Lena, an 11-year old girl with a neuromuscular disease who has lived in Bayit Cham for most of her life, Nissim asks how she is feeling.
Lena looks up from her smartphone and says, “It’s nice not going to school. Everything is okay,” and then goes back to talking to her friends on the phone.
“You see,” says Nissim, “just like any other child!”

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Welcome
We created a new temporary isolated wing for all our respiratory patients in only three days!!

Major changes are taking place right now at ALYN Hospital as we continue to implement our Coronavirus Response Strategy. Our top priority is to protect our patients, the children of ALYN, as well as our dedicated staff, from the spread of COVID-19. Therefore, we created a new temporary wing for our respiratory patients, within 3 days. The wing is isolated from other parts of the hospital.

 

Over the past week, an incredible human effort took place to relocate our entire Respiratory Rehabilitation Department from the third to the second floor of the Hospital. Now, all of our hospitalized patients on ventilation are located in a new temporary wing within a restricted area of the Hospital with separate entrances from outside.

 

This was a major design, medical and logistical endeavor which required hours of planning, purchasing of materials, laying out infrastructures, relocating offices, advanced monitoring system installation, creating two low-pressure isolation rooms and re-construction work both inside and outside of the Hospital.

 

-To isolate the new wing, temporary walls were built in the main corridor, elevator operation pattern was changed, and new locker rooms were built. Tents leading to the temporary wing were added, allowing movement between its parts without exiting the isolated wing. The new wing is closed to visitors and only its staff and patients are allowed to enter. Parents access is also meticulously managed, to prevent entrance of anyone who is not designated to be there.

 

– Office space and accommodation for families have been converted to nurses’ stations, patient bedrooms and therapy rooms. The Respiratory Rehabilitation Department dispensary has been moved as well.

 

– A tremendous amount of electrical work was done to ensure that the restricted area is fully capable of providing the power sources vital for the patients who rely — on respirators, suction machines, pulse-oximeters, humidifiers and a host of other powered equipment.

 

This move was critical in order to protect the most vulnerable patients who have been entrusted to our care – those who already have complex health conditions that affect their respiratory functioning.

The new wing enables us to continue the rehabilitation of 100 children that are hospitalized or in the Day hospital in the general rehabilitation department. These children have brain injuries, severe diseases or are recovering after complicated orthopedic surgeries.

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New reality, new approach: Remote treatments for children and infants with feeding disorders

About 15% of parents of infants struggle with expected developmental milestones and require professional assistance. These issues may include insufficient eating, aversion or resistance to eating, difficulty adjusting to new food textures as the baby grows, and others. In a small number of cases, these issues can become a significant developmental disorder, which is likely to result in long-term medical and developmental consequences. ALYN’s Feeding Rehabilitation Clinic specializes in treatment for these children.

 

In response to the COVID-19 crisis, Israel’s Ministry of Health enacted new regulations that interrupted the regular operation of our Feeding Rehabilitation Clinic. It’s important to understand that stopping the rehabilitation of children at these ages, who are already at very high risk of developing irreversible motor or cognitive delays, creates complex developmental challenges moving forward and increases the risk of further deterioration, leading to a lack of independence, fear of eating or choking, and other long-term consequences. In order to continue providing treatment for these children, our therapists are now using “remote therapy” via video-conferencing.

 

Feeding issues are found more commonly in children with pre-existing developmental disabilities; approximately 80% of those children require professional help to assess their nutrition and function in order to prevent severe secondary complications. These feeding disorders are completely different from the eating disorders associated with adolescent girls who develop a complex relationship with their body image and weight; however, early intervention with a strict rehabilitation regimen can help patients recover.

 

In serious cases, a feeding disorder is severe enough that the infant or child needs an alternative method of feeding to receive adequate nutrition, such as anasogastric feeding tube or a gastrostomy. The decision to use one of these alternative feeding methods is not an easy one and requires knowledge and understanding. But some of these cases could entirely avoid this need by implementing rehabilitation at the right time. Treating eating and feeding disorders during infancy lowers the risk of stunted growth, malnutrition, low IQ, delayed development, and significant strain on the child’s relationship with their parents.

 

At ALYN, we are proud of our high rate of success among babies undergoing treatment for feeding disorders, as well as our success with weaning babies off of alternative feeding methods (i.e. gastrostomies, nasogastric feeding tubes, etc.), allowing them to eat orally like other children their age.

 

One of the most effective tools we use at ALYN during this weaning process is intensive group therapy that treats a number of children simultaneously. The groups are conducted by multidisciplinary feeding teams at ALYN Hospital, led by Judy Blinder, Director of Speech and Feeding Rehabilitation and Head of Speech Development. Toddlers from all over the country attend a 3-week rehabilitation “intensive”, during which the children and their parents learn how to disrupt negative cycles and improve their quality of life by eating naturally and independently.

 

As Israel’s Ministry of health put into place new regulations in response to the COVID-19 pandemic, one such “intensive” was moved online so that the child could continue to receive treatment remotely:

 

B.is a one-and-a-half-year-old child who has been fed through a feeding tube since birth due congenital complications. He has yet to experience natural eating. He has been undergoing dedicated treatments at ALYN for many months, including an extended observation period. After tracking his progress for months, B. recently reached the apex of his treatment when he was invited to join a group therapy intensive. He and his parents arrived at ALYN just a few short weeks ago and began the process of shifting to independent eating, a decision made from a place of hope for progress as well as notable doubt.

 

The current coronavirus pandemic interrupted B.’s rehabilitation right in the middle of the process. While ALYN has been forced to temporarily close the reception at the feeding clinic, we couldn’t possibly stop B.’s treatment. He has made wonderful progress, but because eating is still so new to him, he is only able to nibble at very small morsels of food at a time. This raised a great deal of concern that without guidance, the initial progress he achieved during his stay at the hospital would wane, leading to regression and prompt deterioration. Stopping the rehabilitation process at this stage could lead to B. continuing to depend on his feeding tube for months and even years. To prevent this from happening, we attempted to try something completely new – continuing the rehabilitation process remotely.

 

How does ALYN treat children to wean them off of feeding tubes in remote sessions?

 

B.had his first online treatment this week! He and his mother met with a clinical team during an exciting virtual visit, which included a senior pediatrician, a speech therapist, a developmental psychologist, and a nutritionist.

 

After B. was weighed at home, the clinical team received detailed information about what mealtimes were like at home. The pediatrician evaluated B. by observing him over video, and his mother spoke about the family’s struggles, the difficulties as well as the solutions. After taking the facts into consideration, the pediatrician and the nutritionist determined the need to change the mix of provisions, depending on whether they are being administered orally or via a feeding tube. They were also able to change the recommended amount of daily liquid intake and to give B.’s mother real-time recommendations. The integrative team watched B. eat, giving B. and his mother comments, encouragement, and critical feedback. The clinic’s psychologist was also able to give her opinion and recommendations to his mother, despite being in quarantine at home.

 

B.’s mother told us that the emotional and clinical support that we have been able to provide, even from a distance, has brought them joy. “If it weren’t for these remote rehabilitation sessions, we would have to completely stop the weaning process, which would throw all our hard work down the drain.”

 

Another session has been scheduled for later next week, and we promise to keep you updated!

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Alynnovation 3
Alynnovation 2
Alynnovation 1
Alynnovation Partners With Startups To Support Children With Disabilities During The COVID-19 Crisis

The current coronavirus epidemic has prevented or limited access to crucial services relied on by many people in need of assistive technologies (AT), who are already an unfortunately underserved market.

So while our colleagues dutifully brave the front lines to protect those who need it most, ALYNnovation has partnered with several startups who are working hard to develop AT solutions for novel or exacerbated problems that have arisen since the outbreak. Here’s an inside look into a few collaborative projects we submitted just last week to the Israel Innovation Authority (IIA) to request funding in response to their recent calls for proposals for R&D initiatives in response to the crisis.

 

VoiceItt is the developer of TalkItt, an app that enables people with dysarthric speech to easily use their own voice to communicate. Dysarthric speech can be caused by a number of motor, speech, and language disorders that affect the physiological resources we use to produce speech. Naturally, this impacts the ability of others to understand them, and differs between affected speakers depending on their individual condition. Many people with dysarthric speech have a caregiver who has learned to understand their unique speech patterns and interprets for others. VoiceItt allows the user to train their device to interpret their spoken words into typical speech and play it aloud.

 

Social distancing plays a major role in minimising the spread of COVID-19 as it limits our exposure to airborne particles from both the knowingly and the unknowingly infected that could transmit the coronavirus. A person with dysarthric speech is now left to choose between exposure to potential infection from their caregiver despite being at high risk of complication and being able to communicate for an unknown length of time — neither of which are acceptable. By using TalkItt, people with dysarthric speech can engage in social distancing without losing their independence or their ability to communicate effectively. ALYN’s Speech Therapy team and ALYNnovation joined forces with VoiceItt to submit a proposal to the IIA, for a large-scale pilot that will enable our patients to be independent in their communication.

 

Another way to incorporate data collection with motivating our patients is what Playwork, the team behind PlayBall, do. This is a “smart” fitness ball that senses and measures the user’s activity and tracks their progress throughout their rehabilitation. It’s used to control personalized games and exercises that are part of the interactive Playwork recovery program. Occupational Therapy (OT) treatments are usually administered in a clinic and supported by at-home assignments that are imperative to the therapy’s success. By “gamifying” OT, sessions are more engaging and increase the odds that the patient will genuinely perform their exercises, thereby improving the chances of the treatments’ success. ALYNnovation has proudly worked with Playwork on many joint projects and pilots in ALYN’s OT department, that are currently benefiting children at ALYN and in other pediatric rehabilitation programs.

 

The Playwork system is typically found in hospitals and clinics, allowing multiple users to benefit from it. However, multiple users touching the PlayBall means multiple potential sources of virus transmission. To protect respiratory patients, many face to face medical and paramedical treatments have been postponed or replaced by remote rehabilitation to protect the children, in whom unrehabilitated conditions can have long-lasting effects on their future quality of life and independence. Within our new framework of remote treatments, Playwork offers a take-home solution: by offering the Playwork system directly to patients, patients can continue their therapy while in social isolation at home, or while quarantined in a hospital, with remote guidance and feedback from their therapist. Our proposal outlines a program to give to the relevant patients a PlayBall system during their lockdown so that they can continue their treatment.

 

Takaro Tech is addressing a challenge for patients in lockdown or quarantine who are lacking physical stimulation and activity. Takaro’s platform contains fitness games that are played on connected tiles, which can be combined in various ways to turn any floor into a portable and versatile playground. The surface is operated and managed through a smartphone, which allows the user to easily monitor their progress, track goals, and celebrate achievements.

 

For lockdown or quarantined children, at ALYN and elsewhere, this provides an engaging play experience, as well as an alternative for certain physiotherapy treatments that have been delayed. Using the simple remote controls through their smartphone, a parent or therapist can track a child’s activity and progress through their goals, and even update goals to better adapt them to the child’s ability. If our proposal is accepted, ALYN will be able to provide a QNI system for children in lockdown and to patients in our newly established isolated respiratory wing.

 

We’ve all been waiting for a sign that tells us how much longer our lives will look like this, but children who need assistive technologies don’t have the privilege to wait until then for the rest of the world to figure out how to adapt. Collaboration throughout the chaos, and a little chutzpah, is what makes Israel the Startup Nation. ALYN was founded on many of the same principles which remain true to this day. We continue to do what we can, and to support others doing the same, to empower children with disabilities to reclaim independence, reach their full potential, and enjoy the greatest quality of life possible. No matter the circumstances, we will always push the boundaries of possibility for ALYN’s children.

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Yasmin
Celebrating Yasmin’s Bat Mitzvah under the threat of COVID-19

Mazal Tov to Yasmin!

Yasmin celebrated her Bat Mitzvah yesterday surrounded by the staff, volunteers and children on chronic ventilation who make up her Bayit Cham “family” at ALYN Hospital in Jerusalem, the only hospital in Israel that specializes in pediatric and adolescent rehabilitation.

Yasmin has a congenital neuro-muscular condition which has resulted in, among many other limitations, her inability to breath independently. Nonetheless, Yasmin is an alert, intelligent and communicative pre-teen. She  is one of 11 children on ventilators living in ALYN’s Bayit Chamdormitories for such children whot are unable to live at home with their families for various socioeconomic reasons. Her conditionhasn’t prevented Yasmin from studying at the Ilanot school in Jerusalem, integrating socially, or surrounding herself with many friends and people that love her.

 

For weeks, the staff and volunteers of Bayit Chamhave been planning Yasmin’s Bat Mitzvah party in cooperation with her parents. The hall was booked and invitations were distributed to her family and to her friends from school and from ALYN.

But with the coronavirus outbreak, and because Yasmin and her friends at ALYN who have complex respiratory conditions  are part of the highest risk groups, the party had to be cancelled.

 

“Family members aren’t allowed [to enter the hospital], and that obviously applies to friends and other guests as well,” explains Nissim Alfandari, Director of Bayit Cham. “With Yasmin’s approval, instead of cancelling the party entirely, we just scaled it down. We made a cake together with Yasmin and invited the other children and staff at the Bayit Chamwho are still coming to the hospital. Her family and close friends joined us virtually through their computers and smartphones, and we all sang, played games, and celebrated with Yasmin.”

 

Yasmin told us that she truly enjoyed her party. She also adds that, “After we beat the coronavirus, we’ll celebrate my Bat Mitzvah with a huge party. Until then, I wish everyone good health.

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National Service Volunteers are sleeping in Alyn hospital in order to help children with special needs

Thousands of National Service volunteers have unexpectedly found themselves removed from their placement due to the enactment of strict restrictions to mitigate the spread COVID-19. 16 volunteers, who serve at the ALYN pediatric rehabilitation hospital, found an inspiring solution: they moved into the hospital to allow them to continue working with the children while following the Ministry of Health’s instructions. “It’s important for us to be there to fulfill the kids’ social needs, not just the medical ones.”

 

The Ministry of Health’s guidelines to mitigate the spread of the virus led the 16 National Service volunteers of ALYN Hospital to think about how to continue working with the children while still following the rules. To succeed in both, they moved into the hospital full-time so that they could continue their loyal service without exposing themselves to the public, thereby eliminating the risk of them infecting the children.

 

When Israel shuttered learning institutions at the start of the coronavirus outbreak, thousands of National Service volunteers were left with nowhere to go. They have since been placed in organizations around the country – hospitals, Magen David Adom, employment service offices, and more. The 16 volunteers serving at ALYN Hospital chose to stay and work at the hospital, which required them to move in.

 

“At times like these — when the kids aren’t allowed to spend time with each other, not allowed to have visitors (not even family members), and there are few treatments taking place — it’s important for us to be there to meet the kids’ social and emotional needs, not just the medical ones,” said Yuval Klinghoffer, who volunteers at the hospital’s Respiratory Rehabilitation Department.

 

“We realized that this is part of our duty”

 

As part of their National Service at ALYN Hospital, the volunteers assist the nursing, medical, and paramedical staff in all matters related to treating the children and their needs. The noticeable connection these National Service volunteers have with the children is remarkable, and has made them a part of the every-day landscape of the hospital.

 

Tahel Gelis, who serves at ALYN’s “Warm Home” (Bayit Cham), a boarding school for children on respirators who are unable to be at home, added: “In the beginning, we thought that living inside the hospital would make it easier for us to get in and out [of the department]; eventually we realized that this is part of our duty to protect ourselves and the kids.”

 

ALYN Hospital is Israel’s only pediatric and adolescent rehabilitation facility. ALYN treats children with a wide range of congenital and acquired conditions, including cerebral palsy, neuromuscular diseases, spinal cord injuries, brain injuries, burns. We are proud of our reputation at ALYN as a leading hospital worldwide in the field of Pediatric Rehabilitation.

 

ALYN Hospital is acknowledged worldwide as a premier hospital specializing in pediatric rehabilitation. It is the only facility of its kind in Israel. ALYN’s reputation in diagnosing and rehabilitating infants, children and adolescents with physical disabilities, both congenital and acquired, is meticulous. The children treated at ALYN come from Israel and abroad. The hospital welcomes all patients regardless of religion or nationality.

 

ALYN is fortunate to have a multidisciplinary team providing a wide range of medical services, paramedical therapies and additional state-of-the-art rehabilitation services. ALYN’s various departments and services include: the Rehabilitation Department, the Day Hospitalization Rehabilitation Department, the Respiratory Rehabilitation Department, Multidisciplinary Outpatient Clinics, the Shachar Rehabilitation Educational and Medical Day Care Facility, incorporating infant, kindergarten and school classes, The Skill Building Center, Maslul – the Dyna and Fala Weinstock Therapeutic Sports Center, and the Legacy Heritage Independent Living Neighborhood for Ventilator-Assisted Young Adults. In addition, ALYN is a center of research and teaching for professionals training in the field of pediatric rehabilitation.

 

This article is a translation to English by ALYN Hospital staff of the article written by Avivit Misnikov which appeared on N12 on 25 March 2020. Photo credit: ALYN Hospital.

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Pessach
Pessach
Instead of a Passover gathering

We at ALYN Hospital are well aware of the fleeting nature of freedom. We know what a child goes through when his freedom to move, speak, or play with friends is suddenly snatched away from him.

 

Our work at ALYN is the daily strive to achieve liberation from the bondage of disability and, attain freedom, each and every day. The freedom to walk, speak, bathe without assistance.

The freedom to make your voice heard and to be understood. At ALYN we fight to achieve these freedoms day in and day out. All health care professionals who deal with the various ailments that may afflict children during their critical period of growth and their development on their path to adulthood are freedom fighters.

 

And lo and behold, spring has arrived. Spring is very short in our neck of the woods. One blink, and it is over. I look at the children struggling to return to their regular life, and realize that for our small patients, the freshness and promise of spring are particularly short. A brief period to thrive in, a period once lost could never be again returned. If we fail to take advantage of their years of bloom to liberate them from bondage, children may remain enslaved to disability for the rest of their lives.

 

Along with the specialists from the general hospitals and the community clinics, we are united in our goal to bring these children, enslaved in an injured body, to freedom. We do this with the assistance of advanced medicine, technology, the understanding developmental and pathological processes, and numerous hours of slow and steady work.
This year, the Coronavirus pandemic is threatening to rob these children of their chance for complete rehabilitation.

 

Since Passover is upon us, it strikes me that the analogy arises between the children’s rehabilitative process to the Journey of the Israelites’ exodus from Egypt. Although the night of the Exodus is a seminal event, which we celebrate at the Seder table, it is only the beginning of the hard work ahead of the nation in its quest for true freedom. In Egypt, the Israelites were a down-trodden community dependent on others, a people with physical and mental limitations, not free to run their own lives, subject to physical suffering and spiritual hardship. The Israelites did not recover from this state instantaneously. They first acquired mobility, as they were led out of Egypt and crossed the Red Sea. Later, in the desert, they acquired the ability to express themselves. they initially made their voices heard mainly in to their rehabilitation caregiver, Moses, about the nature of their path, its hardships and inherent risks – in a way quite similar to the claims that are often directed at us, the doctors and nurses and health care professionals, by the families and patients frustrated by the challenging road to rehabilitation. Gradually, as the time passes, the Israelites improve their capabilities, acquire skills, practice independence. Only after a lengthy traverse through the desert was the rehabilitated nation ready to self-rule, conduct community life and assume national responsibilities. And finally, Moses could not accompany the Israelites to the Promised Land much to the same degree that rehabilitation professionals do not accompany their patients towards their future life.

 

The rehabilitative process of the slave nation delivered from physical and spiritual handicap to freedom was slow and required immense patience. There were setbacks, and sometimes caregivers felt on the brink of despair. I doubt whether Moses could have borne the heavy responsibility without his trusted multi-disciplinary team. Although chosen by G-d, he relied on the assistance of others. He use the augmentative communication skills via his brother Aaron, assistive technology from his rod, and the spiritual and healing chaplaincy of his sister Miriam. Moses is the first to directly pray for healing and he is also the first figure to make documented use of an organizational consultant to promote the multi-team work – Jethro his father-in-law who instructed him on how to manage a large team and delegate authority.
The Exodus from Egypt is therefore the deliverance of a handicapped nation into independent functioning.

 

And here we are in the Spring of 2020, at the threshold of Passover 5780, a holiday of virtual freedom. Spring is fully underway around Jerusalem, with its blossoms and greenery – and yet we are not free to roam the country. In the hospital, children are eager to progress with the rehabilitation process – and we are fighting to treat them under the shadow of the pandemic that isolates us all. As caregivers, the restrictions being placed on us are especially unbearable. We all grapple with the fear of the virus. We worry about our parents. We’re frustrated with being cooped up at home. We’re burdened with financial concerns. But on top of it all, our hearts break seeing the children whose rehabilitative potential is being eroded every day they are kept from getting the best care.
The pandemic may threaten the lives of our senior citizens, but it could rob these children of their future.

 

We celebrate the story of the delivery from bondage to freedom, noting the ten plagues that were inflicted upon Egypt. The difference, the “ma nishtana’ is that this modern plague of 5780 does not pass over our doors. It does not distinguish between Jews and non-Jews, between citizens and immigrants. This year, the plague is inflicted upon us all. We will all need to recover from this period.

 

We can minimize the damage and expedite our full recovery if we remember to faithfully practice the skills that we, unlike the children that come to us for rehabilitation, have not lost . Our incapacity is transient, the result of a temporary, environmental change. Our recovery depends on preserving the ability to communicate with each other, to care for each other, and to adapt to new situations and to try and see the positive in them. Many of the children treated at ALYN have not yet acquired these skills, and therefore for them, the rehabilitative process will be much harder, and will require not only a return to routine but also a giant leap to make up for lost time.

 

This year, no one will question why we ask “what’s changed?”. Everything’s changed all of a sudden. When this is all over, we probably won’t be in the same place we were the previous Passover. This year will change us. We mustn’t let this time rob the children we treat of the possibility that on next year’s Seder they will be active participants in reading the Haggadah with the entire extended family.

 

And as Rabbi Kook said: “The exodus from Egypt will eternally remain the springtime of the entire world”.

 

Have a pleasant spring, Happy Passover, and good health and resilience to all

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