Proposed ND Autism Bill Raises Privacy Concerns - Valley News Live - KVLY/KXJB - Fargo/Grand Forks

Proposed ND Autism Bill Raises Privacy Concerns

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Updated Mar. 13 at 6 p.m.  

Controversy tonight surrounding a disorder that affects nearly one in every 88 children. Six North Dakota legislators are trying to increase our knowledge about autism. The bill, if passed, would create a database for those who fall into the autism spectrum. It would provide more resources to those diagnosed. Valley News Live explains why the proposed bill doesn't sit well with some families in the valley.

Two proposed bills in the North Dakota legislature -- HB 1038 and SB 2193 -- have some parents worked up. One bill has the Democrats' backing, and the other is supported by a majority of Republicans, but it's the language that has some parents concerned, especially those with autistic children.

Mom's like Kyla Enderle has concerns for her autistic diagnosed 8 year old son. "He has a lot of problems with social interaction, body language, eye contact."

Enderle's son goes through speech therapy, physical therapy and occupational therapy. A couple days a week he meets up with his school's counselor. If either of these bills pass, her sons personal information would be available to other doctors who have never met her son.

"I hope it doesn't pass and I spent some time this afternoon emailing my senators, and representatives asking that they please vote no on this bill." Says Enderle.

When she heard that a bill wants to share his personal information -- including his name and gender -- with doctors and other medical professionals, Enderle said she just couldn't believe it: "It's an invasion of privacy, that's what it is."

But at Prairie Saint Johns in Fargo, Barb Stanton an autism specialist says a database of personal information is routine in the world of health care.

"There are a number of different registers that the department of health operates from. Influenza, to stroke, to cancer registration that's reported." Explains Dr. Stanton.

Being that autism has so many different faces. Stanton argues this is only the beginning of trying to identify what it is they're dealing with.

"It helps us understand how we can develop services and programs with in the state for individuals if we have an idea about numbers and ages and locations they live in. Then we're able to really be able to focus services and intervention to those areas and individuals." Says Dr. Stanton.

Meanwhile, Enderle and many other moms and dads across North Dakota, don't know what to make of a state database that would hold much of their kids' personal information. Not necessarily a case of big brother knowing to much, but categorizing kids with a condition, that even doctors don't know enough about today.

"When you've met a child with autism you've met one child with autism. Because every child is different." Says Enderle.

New Jersey and New Hampshire have similar bills in the books. They share their state's autism information on a national scale to help others better understand how the disorder works. You can read the exact language in the original story below.



Original Story


A bill going through the North Dakota legislature would have the state department of health establish and administer an autism spectrum disorder database. The original bill states the database would include a record of all reported cases of autism spectrum disorder in the state and any other information determined relevant and appropriate by the department in order to complete epidemiologic surveys of the autism spectrum disorder, enable research and analysis of the autism spectrum disorder, and provide services to individuals with an autism spectrum disorder.

The sponsors of SB 2193 include:

  1. Sen. Joan Heckaman, District 23 Democrat
  2. Sen. Tim Mathern, District 11 Democrat
  3. Sen. Carolyn C. Nelson, District 21 Democrat 
  4. Rep. Dwight Kiefert, District 24 Republican
  5. Rep. Naomi Muscha, District 24 Democrat
  6. Rep. Kylie Oversen, District 42 Democrat

The state department of health would establish criteria regarding who is qualified to report a case of autism spectrum disorder to the database.  That criteria says the reporter needs to be a doctoral-level professional and be appropriately licensed, credentialed, and experienced in the field of autism spectrum disorder, including intellectual testing and other formal evidenced-based assessments for autism spectrum disorders.

In the bill the database established must:

  • Include the reported individual's diagnoses under the American psychiatric association's Diagnostic and Statistical Manual of Mental Disorders.
  • Include a complete physical evaluation of the reported individual, performed by a licensed physician.
  • The state health council shall adopt rules to provide for mandatory reporting to the autism spectrum disorder database and to establish reporting requirements, including timeliness requirements.
  • The state department of health shall keep confidential all records of the database which could be used to identify a reported individual; however, the department may provide these records to other state agencies as necessary to effect the purposes of this database without regard to the confidential nature of the records.
  • If the department provides confidential records of the database to a state agency, the department shall notify the receiving agency of the confidential nature of the records and the receiving agency shall treat these records as confidential.

SECTION 2: Autism spectrum disorder voucher program

Section 2 of Senate Bill 2193 says the department of human services shall establish a voucher program to help fund equipment and general educational needs related to autism spectrum disorder for anyone under age 22 who have been diagnosed with autism spectrum disorder.

The program may include funding for assistive technology; video modeling videos or equipment; language-generating devices; training and educational material for parents; parenting education; sensory equipment; tutors; safety equipment; travel tools; self-care equipment; timers; visual representation systems; language comprehension equipment; and registration and related expenses for workshops and training to improve independent living skills, employment opportunities, and other executive or social skills.

In determining the amount of a voucher for which an applicant may be determined eligible, the department will consider the applicant's level of functioning. Rules will be adopted addressing management of the voucher program and establishing the eligibility requirements and exclusions for this voucher program.

The program may not provide a voucher for early intensive behavioral intervention, including applied behavioral analysis, intensive early interventional behavioral therapy, intensive behavioral intervention, the Lovaas method, the Denver model, LEAP (learning experiences - an alternative program for preschoolers and parents), TEACCH (treatment and education of autistic and related communication handicapped children), pivotal response training, or discrete trial training.

SECTION 3: Department of human services autism spectrum disorder study and report to the legislative management

During the 2013-14 interim, in consultation with clinicians who have expertise in the evaluation, diagnosis, and treatment of autism spectrum disorder, the department of human services shall study autism spectrum disorder services, including the most feasible service delivery system for individuals not served in the developmental disability system who have an autism spectrum disorder. Before August 1, 2014, the department of human services shall report to the legislative management the outcome and recommendations of this study.

SECTION 4: Autism spectrum disorder database.

There is appropriated out of any moneys in the general fund in the state treasury, not otherwise appropriated, the sum of $200,648, or so much of the sum as may be necessary, to the state department of health for the purpose of establishing and administering an autism spectrum disorder database, for the biennium beginning July 1, 2013, and ending June 30, 2015. The state department of health is authorized one full-time equivalent position for this purpose.

SECTION 5: State autism coordinator

There is appropriated out of any moneys in the general fund in the state treasury, not otherwise appropriated, the sum of $400,000, or so much of the sum as may be necessary, to the department of human services for the purpose of hiring a state autism coordinator who would be responsible for implementing a resource and service center to provide information and services for individuals with autism spectrum disorder, developing a statewide outreach plan, conducting regional meetings and an annual conference, and developing a protocol for use after screenings, for the biennium beginning July 1, 2013, and ending June 30, 2015. The department of human services is authorized one full-time equivalent position for this purpose.

SECTION 6: Statewide autism spectrum disorder training effort

There is appropriated out of any moneys in the general fund in the state treasury, not otherwise appropriated, the sum of $500,000, or so much of the sum as may be necessary, to the department of human services for the purpose of implementing a statewide autism spectrum disorder training effort, including physician training, regional training, school staff training, and parent training, for the biennium beginning July 1, 2013, and ending June 30, 2015.

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