With her Brazilian Adeli Suit Method, Daniela Matsuda has constructed a holistic rehabilitation model that enables poorer children with cerebral palsy to develop motor skills in five weeks. Daniela hopes to spread her methods to other public and private medical clinics around South America, encouraging the young patients’ re-inclusion into society.
Die neue Idee
Daniela Matsuda has designed a set of therapies to provide high quality care to poor and marginalized children with cerebral palsy. Based around the Brazilian Adeli Suit, a technology she adapted from rehabilitation programs for Russian astronauts, her methodology especially serves patients from poor and marginalized populations, who experience disproportionately higher rates of cerebral palsy while at the same time lacking basic medical care. Through her extensive experience as the founder and Clinical Director of the Center for Children with Cerebral Palsy in Salvador da Bahía, which employs a nationally recognized treatment practice integrating health and education, Daniela is not only changing the approach of rehabilitation of children with cerebral palsy, but also enabling poor children to have access to treatment and hopefully a life of dignity.
The Adeli Suit method relies on an interdisciplinary approach with specific objectives established for individual patients. Unlike other failed cerebral palsy therapies that work with patients in isolation and normally require years of treatment, Daniela engages the patients’ families during a series of five-week sessions that last between three and five months total. Her team also works with the patients’ school systems to help readapt them to the educational context and prepare their teachers to provide a more positive learning environment. This integrated approach helps promote the children’s reintegration as productive members of society. Daniela also has made her strategy accessible to all sectors of society with the hope of transforming the system of health care rehabilitation in Brazil.
Equipped with the technology and new and innovative method to adapt it in the developing world, Daniela has designed scale strategy to encourage its adoption around the country. After piloting the method for two years with 200 children at her Center, Daniela started to spread the model so that it could reach children and adolescents who had little to no access to basic healthcare services. Daniela plans to launch independent private care centers that employ the Adeli Suit method in all regions of the country. In addition she will train professionals working in existing centers in partnership with city and state health agencies affiliated with the federal Health Ministry and UNICEF. She is also cooperating with the federal government to implement the method in its public health policy. Through her work, Daniela is helping guarantee that every child with cerebral palsy not only receives adequate and integral treatment but can also develop their full potential.
A sensory-motor disability that disrupts the central nervous system, cerebral palsy affects some 1.2 million Brazilians and is increasing at a rate of 30,00 to 40,000 new cases per year. Resulting from lack of oxygen in the brain during the pre-, peri or post-natal periods of a child’s life, cerebral palsy can be caused by a maternal infection, drug use, poor nutrition, anemia, asphyxia during delivery, or other such environmental factors. Tragically, incidence of this disorder worldwide is closely tied to the quality of a country’s public health: among low-income populations without access to nutrition and sanitary medical conditions, the rates of cerebral palsy among newborns run much higher. In fact, seven out of every 1,000 births in underdeveloped countries result in cerebral palsy, compared to 1.5 to 2.5 per 1,000 in developed countries. Therefore, this disability is disproportionately present in same communities that already are suffering from inadequate or inaccessible healthcare.
People living with cerebral palsy in the rural areas are even more vulnerable. In Brazil, the healthcare delivery systems are unable to reach the entire population, especially outside the large urban centers, and the scant medical care that does exist is ill equipped to treat cerebral palsy and other similar chronic disorders. For instance, the federal Healthy Families Program, which has national coverage, does not have physical therapists or doctors on their teams that are trained to treat the symptoms of cerebral palsy.
Even in urban centers and for those families with more disposable income, the therapies traditionally employed to integrate people with cerebral palsy into society are neither known nor engaged. This occurs in part from a misconception that all people with the disability are cognitively impaired. In reality, they are of normal intelligence, unless the disorder has affected the areas of the brain responsible for thought and memory. Nonetheless, patients are frequently less stimulated in their interactions with their family members, therapists and those around them. Consequently, these therapies simply fail to prepare people with cerebral palsy to reach their potential and become independent members of society. This lack of appropriate treatment also drives up costs for the Brazilian welfare system. Because they are not adequately prepared for the formal education system and job market, people with cerebral palsy are dependent on public subsidies. Ultimately this is a largely avoidable federal expense, as with the right holistic treatment people with cerebral palsy can develop the independence that would enable them to lead productive lives.
In some developed countries it is possible to find promising technologies that, if incorporated with an inclusive strategy, can expand the abilities of people with cerebral palsy to the point at which they become self-reliant. However, due to their high cost, these technologies rarely reach developing countries or the populations that need them most. In this way, the most vulnerable sectors, children and adolescents from rural communities, hardly can access the care which would help them break stereotypes of cerebral palsy and lead a life of dignity.
Daniela Matsuda co-founded the Center for Children with Cerebral Palsy (NACPC) in Salvador in 2008 with a focus on prevention, rehabilitation, health promotion and social integration of children and adolescents with cerebral palsy. While her partner, Pedro Guimarães, is dedicated to developing interventions in the area of cerebral palsy prevention and to disseminate scientific information about the disease (work for which he was recognized as an Ashoka Fellow in 2008), Daniela has always been driven separately to identify and strengthen the potential of children with cerebral palsy to transcend stereotypes and promote their inclusion in society. While operating under the auspices of the Center, Daniela is an independent social entrepreneur with her own decision-making power. She is committed to designing and implementing interdisciplinary healthcare methodologies that can encourage the child to reach his or her maximum potential and achieve social inclusion starting first with active participation in treatment by the family. This has become the hallmark of her Brazilian Adeli Suit Method.
Researching innovative rehabilitation technologies to develop opportunities for cerebral palsy cases, Daniela came across the Adeli Suit, a technology initially developed by the Russian Space Agency to rehabilitate astronauts who returned from space missions with serious motor skill deficiencies due to the absence of gravity. In the 1990’s, the equipment became used in Russia as a bracing tool for other types of neuro-functional rehabilitation, including cerebral palsy. Daniela recognized the Adeli suit as a potentially life-changing innovation for treatment in Brazil among poor people, once she could design a methodology for their therapy.
The Adeli suit is a system of special hooks and elastics connected to a garment made of a vest, shorts, knee pads and shoes. It also includes accessories such as caps, elbow pads and gloves. It is dynamic: the arrangement of the hooks and various sizes enable numerous possibilities for elastic biomechanical alignment and the creation of weight resistance in the human body. Thus, the suit stimulates the central nervous system allowing for individuals with motor dysfunction to adjust their posture and movement. The use of the device in Russia, however, to integrate it with other rehabilitation techniques in a fashion that could render more long-lasting therapy for the patient.
Even though she recognized the possibilities of this technology, Daniela needed to adapt it to the Brazilian public health context, facing the challenges of access to the Russian equipment and its cost—between US$1,500 and $2,500 per suit, an incredibly high cost in poor areas. Through diligence, in 2008 Daniela negotiated a relationship with the Russian patent owner to bring the Adeli suit to Brazil with technical trainings for her staff and a donation of 80 suits. Meanwhile, she also piloted new techniques to use the suit for cerebral palsy rehabilitation that would garner more significant physical and functional results at an affordable cost.
Daniela’s Brazilian Adeli Suit Method is characterized by a series of rehabilitation modules of five weeks consisting of two phases. Phase One includes preparatory procedures such as combined massage therapy, passive exercises, assisted activities and exercises. During the Second Phase, patients take part in active exercises with the Adeli suit. After weekly evaluations, therapists design individual objectives and daily record the child’s results. Given the interdisciplinary emphasis of Daniela’s work, her methods incorporate elements of speech pathology, occupational therapy, pedagogy and psychology, among other specialties. Furthermore, to help the child integrate into society and achieve their potential, her team of specialists train the patient’s teachers to give, positive individualized support to their students with cerebral palsy. They will assist them in adopting correct physical posture, which the youth learn in their Adeli suit exercises, and identifying opportunities for growth and possible challenges for each child. The Adeli Suit Method also includes a transitional school that helps children adapt to formal schooling routines, thus enabling these patients to continue their education.
The patient’s family also receives counseling and training to run exercises in their homes during the interim between modules, which can last from three to five months. As a direct consequence of their active involvement in the effective rehabilitation of their children, the families who participate in the Adeli Suit Method also come to regard the local authorities and health professionals in a different light. Health professionals, in turn, are often surprised with the overwhelmingly positive results, and they become more invested in the holistic treatment of cerebral palsy, thus resolving the frequent challenge of disconnected doctor-patient relationships.
Through the adoption of the Adeli Suit Method, Daniela was able to achieve previously unimaginable results with children and adolescents who were already receiving treatment at the Center. In some cases, Adeli suit rehabilitation remarkably accomplished the same results in the five month modules as three to four years of conventional therapy. Once she could observe significant evidence of impact, Daniela started to systemize the method to begin to work with individuals receiving treatment at clinics outside her Center. She compiled a specialized team of twelve professionals who would train additional external healthcare providers in the Brazilian Adeli Suit Method. From May to December 2010, her program served 181 children and adolescents in the rural areas of Bahia and other states with evidence demonstrating effective impact in 98% of cases treated.
Unsatisfied with just providing the therapy to those children with cerebral palsy whose parents could afford it, Daniel has designed financial strategies that enables poorer individuals to access the Adeli Suit Method. In one way, through collecting the fees of two paying clients, Daniela has been able to serve five additional patients at no charge. Moreover, Daniela is forging a partnership with the Brazilian National Healthcare System that by the end of 2011 will hopefully incorporate the Adeli Suit Method in its work. With the public money she will generate, she plans to serve more children from vulnerable backgrounds at low cost.
Daniela envisions that the method can have its greatest potential impact among children and adolescents with cerebral palsy who live in remote areas far from urban centers and who lack of free and quality everyday therapy. To that end, beyond just providing better treatment, the Adeli Suit Method also intends to transform traditional thinking and public health policy toward rehabilitation in Brazil to benefit the entire population, especially the most economically marginalized. Daniela is embarking on expansion of the method to thereby address the poor quality of healthcare around the country. Although the private Russian agency that first designed the suit for astronaut rehabilitation holds the patent on the technology itself, the Center is the sole proprietor of the rights to use and resell the Adeli Suit Method in South America. In fact, the Russians established an accord with Daniela’s Center to implement the Brazilian Adeli Suit Method in their own work. Daniela is also studying models to disseminate it to private rehabilitation clinics in Brazil and Argentina. Under her approach, these clinics would purchase the rights to use the technology and training from Daniela and her team in the methodology. They must also pledge to dedicate a portion of their therapy to patients who otherwise could not afford to receive treatment through the Adeli suit method.
Moreover, Daniela has been working with state and municipal health departments in order to implement the Adeli Suit Method in more geographic regions by contributing to the launch of new rehabilitation centers or empowering existing centers with her holistic therapy. Preparation for implementation is already underway for a center in the Belo Horizonte region and with the Arapiraca municipality in Alagoas. Daniela also enjoys the accreditation of UNICEF in Brazil, which has given her a higher profile and leverage in her negotiations with public institutions. With such expansion plans with both public and private healthcare clinics, Daniela expects to enable all children and adolescents with cerebral palsy to take part in her impressive holistic therapy through which they can begin to reach their potential.
Daniela is the eldest daughter of a marriage between a Chinese mother, who came to Brazil to escape the Cultural Revolution, and a father of Japanese descent, raised in rural Paraná. Her family placed great value on education and responsibility for her community. Since from her early school years in Bahía, Daniela knew she had wanted to take care of people when she grew up. Attending a school that held strong tenets in social responsibility, she joined a group of young Catholics and quickly became the coordinator of extracurricular activities for social ends.
So devoted was Daniela to her extracurricular work that her mother worried that she would fail the entrance exam for medical school. Nonetheless, she passed and upon entering college, she became involved with social justice campaigns. She quickly chose to specialize in pediatrics and completed extra rotations, such as pediatric oncology, obstetrics and neonatology, accompanying mothers and babies and witnessing several cases of childbirths with complications. Daniela realized that the doctors seemed to finish their work after the simple delivery of the child, preferring to delegate the responsibility of following the health of the mother and children to another professional rather than adopting a holistic healthcare approach.
With the goal of more specialized training, she completed her degree and residency at the College of Medicine at the University of São Paulo after marrying fellow doctor Pedro Guimarães. She specialized in pediatric radiology at the Clinicas Hospital and Heart Institute, where she first encountered cerebral palsy. Contact with the clinical reality of this disability without any formal training in the subject shocked Daniela. Indignant, she asked her colleagues to see if, by chance, she had missed any classes on cerebral palsy. It was only then that she realized the lack of attention to the subject, even in medical schools. Upon returning to Salvador in 2001 with Pedro, she decided to commit herself to working with cerebral palsy. Through her work, Daniela is constantly searching for strategies like the Brazilian Adeli Suit Method that can offer holistic treatment and ultimately ensure dignity for children with cerebral palsy and their families.