Saturday, March 19, 2016

Kevin and Avonte's Law of 2016


Senate Judiciary Committee Chairman Chuck Grassley of Iowa and Senator Chuck Schumer of New York have introduced legislation to help families locate missing loved ones who have autism or other conditions that may cause them to wander away from caregivers. S.2614, also known as Kevin and Avonte’s Law, will reauthorize the expired Missing Alzheimer’s Disease Patient Alert Program and include new provisions to support people with autism.  
Kevin and Avonte’s Law is named in honor of two boys with autism who perished after wandering. Nine-year-old Kevin Curtis Wills jumped into Iowa’s Raccoon River near a park and drowned in 2008.  Fourteen year-old Avonte Oquendo left his school and drowned in New York City’s East River in 2014. 
You can read more about it here.

This bill is currently in the Senate Judiciary Committee, which includes both Utah's senators.  If you'd like to do something about wandering, now would be a good time to contact them:
Senator Mike Lee

UPDATE:  This bill made it through the Judiciary Committee with a 15-5 favorable vote.  Thank you for your support, Senator Hatch!


Friday, February 5, 2016

2016 Legislation and Appropriations Update

Legislation:


Guardianship:


HB101  DISABLED ADULT GUARDIANSHIP AMENDMENTS


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:


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.


SB73 MEDICAL CANNABIS ACT
SB89 MEDICAL CANNABIDIOL AMENDMENTS


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.”


Appropriations:


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 utahautismcoalition@gmail.com - we will forward it at the appropriate time or ask you to send it when it matters most.