We call for the inclusion of an additional point (1a) in § 3 of the Ordinance on the Assessment of Disability and Degree of Disability , which reads:
The affirmative answer to the question "Does the patient require the care of a second person due to inability to live independently" indicated in the medical certificate is binding on the decision-making panel, which does not include a specialist doctor or a doctor with at least the first degree of specialization in a field that allows the diagnosis of the underlying disease, condition or other health impairment indicated in the certificate.
According to the NIK Report, 1 child in 115 is on the autism spectrum. Not all of these children are independent. For many children with autism, it is necessary to indicate permanent or long-term care or assistance of another person in connection with significantly limited ability to live independently. This is known as point 7 of the ruling. Usually its indication means guaranteeing financial support, therapy, or access to doctors-specialists without a queue. Its absence means putting the parent in front of a choice: work or therapy for the child? A chance for the child's independence in the future or ongoing maintenance of the home and family?
Today, the ruling is decided by the Disability Assessment Panel. It happens that this panel, often without meeting the patient directly, undermines the recommendations for the need for constant care made by the specialist doctors who diagnosed the children and care for them on a daily basis. This means that the expert diagnosis of a doctor who cares for the child and is well acquainted with the child's needs in life is undermined.
Meanwhile, it is the attending physician, who knows the child, who is able to assess whether he or she requires the care of a second person, due to dependency. This is especially important in such complex cases as autism. Autism is a hidden disability. A commissioned adjudicator, who often has no contact with the patient or familiarity with the specifics of autism, has no practical way to assess the child's level of functioning. In the pandemic, these problems have multiplied, as there is virtually no examination of the patient by the commission. In some cities, there is a good practice of telephone contact between the doctor-advisor and the parents or doctors and specialists who issued the documents submitted to the commission. This is not the standard, so there is a lack of objectivity in such adjudication.
We are parents, families, caregivers, therapists and allies of individuals
with autism. On a daily basis, we see how much harm can be done by regulations that for years have focused on institutions, formalities and processes if good will is lacking. We believe that medical specialists who manage children with autism deserve trust. We believe that children with autism deserve therapy and care.
Therefore, we appeal: Let's trust the doctors! Let's guarantee therapy and care for children. Let's adjust the way we adjudicate to the needs of people with hidden disabilities, including those on the autism spectrum, who are currently being deprived of the care they need.
We are proposing a simple system solution that will not significantly change the way the Disability Assessment Teams operate
We propose to remove the legal awkwardness that indirectly leads to the deterioration of living conditions
and material conditions of families of people on the autism spectrum.
We call for a legal change that would oblige committees to respect a doctor's recommendation to grant permanent care for a child if they do not have a specialist on their staff who is familiar with the specifics of the disability in question.
Authors of the appeal
and parents of dependent children with autism:
Kinga Rossa Megger