Friday, February 5, 2016

2016 Legislation and Appropriations Update




This bill makes it standard procedure to not require legal representation for a person who is gaining a guardian. It's almost always a noble thing for someone to assume the role of a guardian. On the other hand, it's a serious thing for someone to lose their right to self-determination for the rest of their life.
The Utah guardianship process was too expensive, but a bill last year helped that tremendously by reducing the cost. Additionally, a process for getting pro bono or low cost legal representation is now in place across the state. It's now a very small barrier to cross.
Families aren't always simple - people get divorced and sometimes things ugly. Disabled people are particularly vulnerable to exploitation and abuse, sometimes even by a parent or adoptive parent.
If you agree that the system put in place last year is a low enough barrier to guardianship or that a person should have the right to an attorney in this situation, then you might want to contact your legislator.
This bill is currently in the House Judiciary Committee.  From the last meeting, they are giving the legal ramifications serious consideration.


Epilepsy affects somewhere between 20% and 40% of people with autism.  Our knowledge base about epilepsy is not strong at the Utah Autism Coalition, but there’s an organization that advocates for people with epilepsy: the Epilepsy Association of Utah.

HB75  EPILEPSY TRAINING IN PUBLIC SCHOOLS - It sounds like a positive thing at first glance, but please read this statement from the EAU.

HB58  HEMP EXTRACT AMENDMENTS - this extends and modifies the 2014 law.  It seems to be moving quickly with little opposition.

Two bills offer different strategies for medical marijuana.  Here is a Salt Lake Tribune article comparing them.


In a recent press release, the EAU and Hope 4 Children with Epilepsy stated that they “stand in support of any legislative measures allowing the expansion of all treatment options, specifically any medical-grade product derived from the cannabis plant.  We encourage lawmakers to find acceptable solutions to bring these therapies to patients as soon as possible.”


The Social Services Appropriations Subcommittee will be taking public testimony on appropriation requests on the following days:

  • Monday, February 8, 2016 for the Department of Workforce Services and for Medicaid Expansion.
  • Tuesday, February 9, 2016  for the Department of Human Services including: the Division of Aging and Adult Services, the Division of Child and Family Services, the Division of Substance Abuse and Mental Health Services, and the Division of Services for People with Disabilities.
  • Wednesday, February 10, 2016  for Department of Health including: Children with Special Health Care Needs, Baby Watch/Early Intervention, Traumatic Brain Injury, and Medicaid.

If you want to testify, you must contact Debbie Benson before 1:00 pm on the working day before the scheduled meeting. She can be reached at (801) 538-1034.  The Social Services Appropriations Subcommittee meets in room 30 of the House Building on the Capitol Complex.  The meetings are from 8:00-10:50 am.

Baby Watch/Early Intervention

All of the appropriation requests above are important, but funding for Baby Watch/Early Intervention is one area in particular where the autism community may want to contact their legislators. As described here, the program is underfunded...referrals continue to increase while funding has remained flat. An increase was requested, but not included in the governor's budget. If that's going to be addressed, it will need to be done through the committee mentioned above.

Monday, February 1, 2016

Autistic young adult with a love of tech, but limited job prospects?

The 2016 Utah legislative session has begun.  Things start off with appropriations.  The following item is coming up within the next few days.  Other items coming up soon include BabyWatch/Early Intervention, Guardianship, and legislation affecting those with epilepsy.  Stay tuned!

Columbus Hub of Opportunity 

Columbus is a non-profit which helps individuals with disabilities live and work in the community.  Their current project is building a low income housing facility located at a transit hub.  Residents will have access to both TRAX and UTA bus lines, greatly increasing their independence.  The ground floor will provide retail space, including a grocery store.  

There are a lot of wonderful things to say about this project, but our focus at the UAC is autism and public policy.   Autism is a spectrum disorder that encompasses people with vastly varying abilities and constraints.  A significant part of this project is dedicated to serving people on a part of the spectrum.  The Columbus Center is seeking an appropriation from the state for about 3% of the cost of this project. 

A portion of the space will be devoted to young adults on the autism spectrum who have the potential to work in an IT field, but don't have the social skills to succeed in an interview and are unlikely to attend college.  For this project, they'll be teaming up with two established groups, one international and one local.

Specialisterne is a non-profit with the goal of finding employment for people with autism that takes advantage of their unique strengths. Here’s a video about it:

Neuroversity is a start-up with similar goals which grew out of research from the U of U. Here’s a video about it:

The Business, Economic Development, and Labor Appropriations committee will be presented with testimony about this project on Wednesday, February 3rd.  If you know of an autistic person whose life a project like this might impact or could have impacted, please let the committee know.  If you happen to be in a committee member's district, your voice will have much more resonance.  Please send them an e-mail, relating your story.  If the videos above seem helpful, please share them.

Members of the committee include:

Sen. Brian E. Shiozawa (R), Senate Chair
Rep. Dixon M. Pitcher (R), House Chair
Rep. Stewart Barlow (R), House Vice Chair
Sen. Curtis S. Bramble (R)
Sen. Gene Davis (D)
Sen. Wayne A. Harper (R)
Sen. Ann Millner (R)
Sen. Jerry W. Stevenson (R)
Sen. Evan J. Vickers (R)
Rep. Johnny Anderson (R)
Rep. Patrice M. Arent (D)
Rep. James A. Dunnigan (R)
Rep. Jeremy A. Peterson (R)
Rep. Val L. Peterson (R)
Rep. John R. Westwood (R)
Rep. Mark A. Wheatley (D)
Rep. Brad R. Wilson (R)  

To find your legislators, go to this link.  If you have a story to tell, but your legislators are not on the committee, please send your story to - we will forward it at the appropriate time or ask you to send it when it matters most.

Monday, November 23, 2015 open enrollment for 2016

If you have insurance and want to figure out if it will cover autism in 2016, Autism Speaks has an on-line guide that can help you figure that out.

Medicaid covers autism up to age 21 and CHIP provides affordable coverage. Both programs are means-tested, so your family may have too much income to qualify. You can learn more about insurance and coverage options in Utah here and here.
If your health insurance isn’t going to cover autism in 2016 and Medicaid and CHIP are not options, you might want to consider going on to purchase a plan. Enrollment is open from now until January 31st. If you purchase a plan by December 15th, coverage will begin on January 1st. If you purchase by January 15th, coverage will begin on February 1st. Plans purchased between January 15th and 31st start coverage on March 1st.

How much these plans will cost depend on your family’s financial situation. The website is set up to walk you through all that, but you can look at plans without entering everything - go to, click on “preview 2016 plans”, put in your zip code, and hit "skip" twice and click on “go to full-price plans”.

Plugging in my zipcode, I get 69 plans from 4 insurers:

  • SelectHealth (57 plans)  
  • Humana (5) 
  • University of Utah (4)  
  • Molina (3)  
The plans typically have different levels of coverage from bronze to platinum, with different deductibles, co-pays, co-insurance, and maximum out-of-pocket. Which plan is best for your family depends on your situation.

To look at a plan, click on "Learn more about this plan", and you'll be taken to a page with links to "summary of benefits", provider listing, and plan brochure. The summary of benefits uses consistent terminology across all plans, so that's a good tool for comparison.

Autism coverage will generally fall under "Mental/Behavioral health outpatient services". Some of the plans don't cover if the provider is not in-network. 

One thing to watch out for is per visit co-pays. If an ABA provider is coming 5 days per week with a $50 co-pay every time, things will add up quickly. 

Pay close attention to the maximum out of pocket expenses.  Depending on what sort of treatment plan you have, you may be quite likely to hit that.  Note that some plans don't count mental health expenses against the out of pocket limit.

This spreadsheet lists all the Utah ACA plans, with numbers assuming a family of one parent + one child.  Thanks, Mirella Petersen, for making it available.

According to the new law, every individual plan on this market should provide coverage.  I called up the customer service numbers listed on for each of the 4 insurers and asked these questions:
  • Do you have providers who can diagnose autism and provide behavioral therapy?
  • What is the process for finding a provider if there's not one in network?
  • Do you provide coverage beyond the minimum required under SB57?
  • Can you confirm coverage of the following CPT billing codes:  0364T, 0365T, 0368T, 0369T, 0370T, and 0371T?
The following is a paraphrasing of what they said:



Do you have providers who can diagnose autism and provide behavioral therapy?

It looks like we have a large number who have an interest in autism and could provide a diagnosis.  I don't see anyone with BCBA credentials.

What is the process for finding a provider if there's not one in network?

We can handle things on a case-by-case basis, but if there's a need for providers, we try our best to get them in network.

Do you provide coverage beyond the minimum required under SB57?

No - we're in line with SB57 in terms of age and therapy caps.

Can you confirm coverage of the following CPT billing codes: 0364T, 0365T, 0368T, 0369T, 0370T, and 0371T?

Our system isn't set up for those codes yet, but when the coverage begins we should if those are autism treatment codes.

University of Utah
The U of U plans specifically say that autism is covered.
Do you have providers who can diagnose autism and provide behavioral therapy?

We have psychologists, psychiatrists, and social workers.  We're currently working with UNI to contract for ABA services.  That won't be ready until January.

What is the process for finding a provider if there's not one in network?

Our providers are concentrated in the University of Utah, so this plan is most beneficial to people who can access those providers.  If you're out of network, there's an out of network cap. 

Do you provide coverage beyond the minimum required under SB57?

No - our coverage matches SB57, as specified in this document.

Can you confirm coverage of the following CPT billing codes: 0364T, 0365T, 0368T, 0369T, 0370T, and 0371T?

I don't have the codes, but a case manager will call you back with that info.


Do you have providers who can diagnose autism and provide behavioral therapy?

I don't know - I don't know anything about autism or who diagnoses it...we have doctors.

What is the process for finding a provider if there's not one in network?

Is it a mental health thing?  We contract that out - you could talk to them.

Do you provide coverage beyond the minimum required under SB57?

We don't specifically cover autism, but we do cover medically necessary mental health treatment.

Can you confirm coverage of the following CPT billing codes: 0364T, 0365T, 0368T, 0369T, 0370T, and 0371T?

We do have those codes in our system, but it says that prior authorization is required.


Humana doesn't mention autism, but excludes "Services and supplies that extend beyond the period necessary for evaluation and diagnosis of learning and behavioral disabilities or for mental retardation."

I was never able to get a good connection with a Humana representative. If that changes, I'll update this.

How to decide?

To make a good choice, you need to make the most accurate guess about what your expenses are going to be. If you're looking for behavioral therapy, contact a behavioral therapist and explain what you're trying to do. If you don't have an official diagnosis yet, you will need to figure that in too.

You needn't hesitate to call the customer service line for an insurer you're considering. It may cost you some time now, but it can save you money in the future. Keep in mind that autism coverage is new in this state and things are still being sorted out. Those customer service reps may not know the answers, but it's part of their jobs to find out and help you.

Good luck!