Common Questions for Families, Providers and Mandatory Reporters
What is Autism Spectrum Disorder (ASD)?
ASD is a developmental brain disorder that affects a person's behavior, communication and social skills. Signs of ASD begin during early childhood and typically last throughout a person's life. The severity of symptoms is different in each person and the symptoms may change in response to early intervention, growth and development.
A diagnosis of ASD includes several conditions that used to be diagnosed separately: Asperger's Syndrome, Autistic Disorder, Childhood Disintegrative Disorder (CDD), and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).
What is the difference between a medical diagnosis and an educational diagnosis of ASD?
A medical diagnosis is made by a physician based on an assessment of symptoms and diagnostic tests. A medical diagnosis of ASD is most frequently made by a physician based on criteria from the Diagnostic and Statistical Manual of Mental Disorders (DSM). An educational determination is made by a multi-disciplinary team of various school professionals. The evaluation results are reviewed by a team of qualified professionals and the parents to determine whether a student qualifies for special education and related services under the Individuals with Disabilities Education Act (IDEA).
What is the Autism Spectrum Disorder Database?
In 2013, the North Dakota Legislature passed a law (NDCC chapter 23-01-41) that requires the North Dakota Department of Health (NDDoH) to create and manage a database that includes a record of all individuals diagnosed with ASD. The information collected will be used to complete epidemiologic surveys, research and analysis, and to provide services to individuals with ASD.
How are individuals reported into the database?
After an individual has been diagnosed with ASD, a physician, psychologist, health care professional, or their designee will report the individual by completing a specific form and submitting it to the NDDoH. Only individuals who are North Dakota residents or one of the individual's parents/guardians are a resident of North Dakota will be reported.
When does reporting take place?
A reporter or the reporter's designee has to report newly diagnosed individuals into the database within 30 days of diagnosis. A reporter or the reporter's designee has to report previously diagnosed individuals into the database within 30 days of the individual's first patient or client encounter with the reporter. The reporter/diagnostician will make the determination on whether the form is filled out on the same day the diagnosis is made or during a follow-up appointment with the patient or client.
What information will be in the database?
The database contains the following:
- Demographics such as the individual's date of birth, gender and race
- Contact information for the individual and the parents or guardians
- Information about the diagnostician and the person submitting the form
- Information about the tools that were used to make the diagnosis
Why is personal information being collected?
Personal information is collected to:
- Prevent duplications in the database
- Update data over time so the information continues to be accurate
Will individuals who have a diagnosis of autism have to repeat diagnostics in order to be reported into the database?
The report form allows for previously diagnosed individuals to be reported into the database without the need for repeated diagnostics. Ultimately, it is up to the reporter/diagnostician to decide whether or not an individual needs to be re-evaluated for ASD using current diagnostic tools and references.
An individual wouldn't need to repeat diagnostics if a qualified reporter was part of the diagnostic team that evaluated and diagnosed the individual with ASD for the North Dakota ASD Waiver. The reporter on the diagnostics team or the reporter's designee will have to complete the form and submit it to the NDDoH.
Do individuals need to give consent to be reported into the database?
Reporters are required by law to report ASD diagnoses in the database. Individuals and parents/guardians cannot opt-out of reporting. Signed consent by the individual or the parents/guardians are not required.
What if the reporter/diagnostician does not report the individual into the database?
An individual or parents/guardians can request that the reporter/diagnostician report the individual into the database. If reporting doesn't happen, even after it is requested, the individual or the parents/guardians can contact the NDDoH for assistance.
How private is the personal information being collected?
The NDDoH is committed to protecting the privacy and confidentiality of individuals reported into the database. All personal information is kept in a secure environment that is password protected. Strict security precautions are used to prevent outside access to the information and only those authorized by the NDDoH will be able to view the data. The NDDoH follows all rules required by the Health Insurance Portability and Accountability Act of 1996 (HIPAA).
Can a reporter/diagnostician access the database to see who's been reported?
A reporter/diagnostician cannot access the database to see who's been reported. The reporter/diagnostician will be instructed to report into the database any patient or client that has been diagnosed or previously diagnosed with ASD. The reporter/diagnostician has the option of printing out the report form to include in the patient or client's medical records/chart or a note can be added to the medical records/chart indicating that the individual with ASD has been reported to the database. Also, the reporter/diagnostician can contact the NDDoH to verify whether a patient or client has been reported to the database.
Why should an individual be reported to the database?
There has been increased attention on the frequency of ASD diagnoses in the United States. At this time, there is no clear understanding of how many individuals have ASD in North Dakota. The information that is collected in the database will help shape appropriate policies and practices to improve services and support for people with ASD.
What is North Dakota law?
In 2013, the North Dakota Legislature passed a law (NDCC chapter 23-01-41) that requires the North Dakota Department of Health (NDDoH) to maintain a database of individuals diagnosed with ASD in order to complete epidemiologic surveys, research and analysis, and to provide services to individuals with an ASD.
A mandatory reporter is a physician, psychologist, or health care professional who is qualified by training and licensure or certification to make the diagnosis of ASD. The reporter or the reporter's designee must report to the NDDoH any person who is a resident of North Dakota, or whose parent/guardian is a resident of North Dakota, and is diagnosed with ASD based on DSM criteria.
How is ASD defined?
A diagnosis of ASD includes several conditions that used to be diagnosed separately: Asperger's Syndrome, Autistic Disorder, Childhood Disintegrative Disorder (CDD), and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).
How are individuals reported into the database?
A reporter or the reporter's designee must report to the NDDoH any individual diagnosed with ASD who is the reporter's patient or client. Reporters are encouraged to discuss reporting requirements for the database with the reported individual or the parents/guardians of the individual.
In order to report an individual to the NDDoH, complete the Autism Spectrum Disorder Report form which can be found at www.ndhealth.gov/cshs/autism.htm. Submit the form electronically or use a fillable PDF version that can be printed and returned to the NDDoH via mail or fax.
A reporter or the reporter's designee must report newly diagnosed individuals to the NDDoH within 30 days of the diagnosis. Previously diagnosed individuals must be reported to the NDDoH within 30 days of the individual's first patient or client encounter with the reporter.
What information will be collected?
The database contains the following:
- Demographics such as the individual's date of birth, gender and race
- Contact information for the individual and the parents/guardians
- Information about the diagnostician and the person submitting the form
- Information about the tools that were used to make the diagnosis
Why is personal information being collected?
Personal information is collected to:
- Reduce duplication and over-reporting
- Update data over time so the information continues to be accurate
Do individuals have to be reported into the database?
ASD is a mandatory reportable condition so all individuals diagnosed will need to be reported. Signed consent is not required.
Can a reporter/diagnostician access the database to see who's been reported?
A reporter/diagnostician cannot access the database to see who's been reported. The reporter/diagnostician will be instructed to report into the database any patient or client that has been diagnosed or previously diagnosed with ASD. The reporter/diagnostician has the option of printing out the report form to include in the patient or client's medical records/chart or a note can be added to the medical records/chart indicating that the individual with ASD has been reported to the database. Also, the reporter/diagnostician can contact the NDDoH to verify whether a patient or client has been reported to the database.
Will individuals who have a previous diagnosis of autism have to repeat diagnostics in order to be reported into the database?
The report form allows for previously diagnosed individuals to be reported into the database without the need for repeated diagnostics. Ultimately, it is up to the reporter/diagnostician to decide whether or not an individual needs to be re-evaluated for ASD using current diagnostic tools and references.
An individual wouldn't need to repeat diagnostics if a qualified reporter was part of the diagnostic team that evaluated and diagnosed the individual with ASD for the North Dakota ASD Waiver. The reporter on the diagnostics team or the reporter's designee will have to complete the form and submit it to the NDDoH.
How does the NDDoH keep personal information confidential?
The NDDoH recognizes the importance of protecting the privacy and confidentiality of those individuals reported into the database. All personal information is kept in a secure environment that is password protected. Access is limited to those designated by the NDDoH. The NDDoH practices strict confidentiality procedures and is in compliance with the Health Insurance Portability and Accountability Act of 1996 (HIPAA).
Why should an individual be reported to the database?
There has been increased attention regarding the prevalence and diagnosis of ASD in the United States. At this time, there is no clear understanding of how many individuals have ASD in North Dakota. The information that is collected in the database will help shape appropriate policies and practices to improve services and support for people with ASD.
Questions about the fillable PDF form (SFN 60804):
How long does it take to complete the fillable PDF form?
According to providers that have tested and submitted the fillable PDF form it takes approximately 20 minutes to complete it in its entirety. Overall, the completion time will depend on how accessible the information is to the provider as they are filling out the form.
Having technical issues with the fillable PDF form?
Users with Adobe 6.0 or higher will need to change a setting before completing the form so that the tabbing order works correctly.
- Open Adobe Acrobat, go to the tab on the top labeled Edit, go to Preferences, select Accessibility, and make sure the box labeled "Use Document Structure for Tab Order When No Explicit Tab Order is Specified", is NOT checked
Why doesn't the fillable PDF form allow the cursor to tab through all the checkboxes?
Manual entry is required for check boxes that require an either-or option or choose-one selection. This helps ensure that only one box is checked at a time, thereby reducing errors.
Why is the top portion of the words missing while typing in the question boxes?
When typing in question fields on the report form the tops of the typed-in words will be cut off. This is the way that the current edition of Adobe Acrobat is set up. Once that field is typed in and the tab button is used to go to the next question, the typed-in words will be fully legible.
For Mandatory Reporters
North Dakota Department of Health (NDDoH) Response to Questions from Mandatory Reporters