Monday, October 31, 2016

Survey Response: Craig Bowden Candidate for US Congressional District #1


Survey Response: Craig Bowden Candidate for US Congressional District #1

Candidates for the November 2016 elections were given the opportunity to answer a few questions relating to autism.  The following are Craig Bowden's responses.


Healthcare:  44 states (including Utah) have enacted legislation requiring health insurance to cover autism.  State law cannot affect self-funded plans, which fall under federal ERISA rules.  Would you support adding autism coverage to federally-regulated plans?

Craig Bowden:  Yes. I believe that people on the spectrum should be covered.

Education:  Over the past 4 decades, the ADA and IDEA have dramatically improved access to education for students with disabilities, including those with autism.  Many students with autism need the support of an IEP or 504 plan in order to access an education.  Although IDEA requires states to provide services and provides some federal funding, that funding has never reached the originally intended 40%.  In 2016, IDEA is funded at around 16%.  Would you support efforts to increase federal funding for IDEA?

Craig Bowden:  First we need to find out where the money allotted actually went. Before
we can ever discuss an increase in spending, especially where we are
sitting at nearly $20 trillion in debt, we need to identify where money
is going.

Employment:  In the years following high school, 2/3rds of people with autism are neither employed nor continuing education.  “H.R. 5587: Strengthening Career and Technical Education for the 21st Century Act” passed the House in September.  It supports career and technical education (CTE) programs and helps students with autism gain skills necessary for employment.  Do you support such legislation?

Craig Bowden:  Yes.

Wandering:  Almost half of children with autism wander from a caregiver.  “S. 2614: Kevin and Avonte’s Law of 2016” passed the Senate in July.  It provides federal support for equipment and training for first responders and schools to combat wandering.  Do you support such legislation?

Craig Bowden:  100%. Law enforcement and first responders need to have adequate
training to ensure they are prepared to interact with individuals in the
spectrum.

Personal experience:  The autism rate in Utah is 1 in 54.  Your family and social circle doesn’t have to be very large before it includes someone with autism.  If you want to share any personal or professional experience with autism, please do so.

Craig Bowden:  My step son Brandon is autistic. I personally understand the challenges
people in this community face, as I am one of them. It is important to  me to ensure that there is equal opportunity for him and others in our  state and nation. Especially in education where it takes a dedicated  group of teachers, counselors, and administration working with the
parents and child to bring the best outcome possible for them.



Wednesday, October 19, 2016

Survey Response: Doug Owens, Candidate for U.S. Congressional District #4



Candidates for the November 2016 elections were given the opportunity to answer a few questions relating to autism.  The following are responses are from Doug Owens:

Healthcare:  44 states (including Utah) have enacted legislation requiring health insurance to cover autism.  State law cannot affect self-funded plans, which fall under federal ERISA rules.  Would you support adding autism coverage to federally-regulated plans?

Doug Owens:  I understand how expensive it can be to care for a child with autism, and I would support adding autism coverage to federally-regulated plans. I also know that those expenses often don't end when the child becomes an adult. It's estimated that care for an adult with autism will cost more than $3 million over a lifetime, and few parents have much, if any, excess cash to pay into a savings plan to prepare for those expenses. This is why I proudly supported the ABLE Act, and would have co-sponsored it in Congress. The ABLE Act helps individuals save money to cover expenses like housing, transportation, education, and other types of necessary assistance.  These tax-exempt saving accounts will help reduce the financial stress and difficulties individuals with autism and their families face when planning for their future. In addition, these accounts will not impact eligibility for disability benefits. I also support broadening 529 college education savings plans to include children with special needs. Individuals with autism and their families need the financial flexibility and freedom to live a life that suits them best.

Education:  Over the past 4 decades, the ADA and IDEA have dramatically improved access to education for students with disabilities, including those with autism.  Many students with autism need the support of an IEP or 504 plan in order to access an education.  Although IDEA requires states to provide services and provides some federal funding, that funding has never reached the originally intended 40%.  In 2016, IDEA is funded at around 16%.  Would you support efforts to increase federal funding for IDEA?

Doug Owens:  Ensuring that every child receives a quality education is one of my highest priorities. I understand the unique needs and demands involved with educating autistic children, and I am committed to supporting measures that provide them with the best education possible.  All educators, not only special education teachers, are vastly under-valued and under-paid, and we must develop ways to bring more money into the Utah education system that will provide our educators with the resources and flexibility to address the most pressing needs of their students. This is especially true for special education needs. As a Member of Congress, I will work to ensure that any revisions to the No Child Left Behind Act would increase funding and reduce burdensome requirements for improving special education. I will fight to maintain Utah's share of federal resources for Title 1 schools and special education programs.

Employment:  In the years following high school, 2/3rds of people with autism are neither employed nor continuing education.  “H.R. 5587: Strengthening Career and Technical Education for the 21st Century Act” passed the House in September.  It supports career and technical education (CTE) programs and helps students with autism gain skills necessary for employment.  Do you support such legislation?

Doug Owens:  I have seen firsthand how those with autism benefit greatly from being employed. That is why I would have voted for and strongly support the Strengthening Career and Technical Education for the 21st Century Act.

Wandering:  Almost half of children with autism wander from a caregiver.  “S. 2614: Kevin and Avonte’s Law of 2016” passed the Senate in July.  It provides federal support for equipment and training for first responders and schools to combat wandering.  Do you support such legislation?

Doug Owens:  When elected to Congress, I will strongly support Avonte's Law and would also be proud to introduce the House version of this bill. I understand that wandering is one of the greatest fears for families of autistic individuals. The option of tracking devices would not only help reduce the stress families face when their child wanders, but would also reduce the cost and length of potential searches. The $10 million in grants provided in this bill would help make tracking devices an accessible option for working families. Utah's incidence of autism, which is one in 54 children, is higher than the national average, and I would fight hard for Utah to receive a greater share of these grants.

Personal experience:  The autism rate in Utah is 1 in 54.  Your family and social circle doesn’t have to be very large before it includes someone with autism.  If you want to share any personal or professional experience with autism, please do so.

Doug Owens: My wife Cynthia and I are the parents of four wonderful children, one of whom has high-functioning autism. Autism is not an "issue" for us. We have lived and continue to live the concerns of parents with children on the spectrum. When elected, you can count on me to work tirelessly to ensure that all individuals on the spectrum and their families have the resources they need to address the condition and flourish in our society.

Friday, October 14, 2016

Survey Response: Janet A Cannon Candidate Utah State Board of Education District #8

Survey Response:  Janet A Cannon Candidate  Utah State Board of Education District #8

Candidates for the November 2016 elections were given the opportunity to answer a few questions relating to autism.  The following are Janet A Cannon's responses

What's working?  Special needs are treated in a variety of ways across Utah's school districts.  Can you tell us about a program, practice, or policy that you've seen be effective and would like to see become more widespread?

Janet A Cannon:  What works for special needs students often is the same thing that works for other students; they benefit from small class sizes, well trained teachers with plenty of experience, and paraprofessionals in the classroom to help personalize instruction to their needs.  All of these items cost money.  Utah has the most poorly funded classrooms in the nation and I believe that impacts our students with special needs severely.  Utah used to be among the top ten states in making an effort to fund public education.  In recent years we have dropped to 31st.  Now our schools are poorly funded because we choose to give other items in the state budget a higher priority than our children.  I believe this needs to change.   Instead of merely giving lip service to the idea that our children are our most precious resource; we should back that idea up with dollars for their education.  Specialized schools like the Carmen Pingree School and the two campuses of Spectrum Academy are providing great service for autistic kids. 


What's not?  If there's something in particular you think we should be rid of, tell us!  

Janet A Cannon:  I think we should be rid of the largest class sizes in the nation, the most poorly funded classrooms in the nation and teachers who rank 49th in pay.  None of these work for the benefit of our children.

Funding:  Considering the limited funds currently available, even when additional Federal funding is included for special needs students (source), how would you help address the concerns and growing population of autistic children within the state?

Janet A Cannon:   There are at least 11,000 autistic students in Utah’s school system; a significant number.  As I have indicated previously, I believe it is vital for all students that the state of Utah once again become one of the top ten states in making an effort to fund education.  

Teacher Shortage:  The recent teacher shortage has sparked many innovative ideas. One is the new track to teaching policy that “allows schools to hire individuals without teaching licenses or experience” (SL Tribune, June 14).  Utah’s universities require classes specific to special education for those obtaining education degrees.  Educators without an education degree will be missing some training that is particularly important for our community. How would you address that?

Janet A Cannon:  I think the recently passed Alternative Pathway to Teaching should be repealed.  It is disrespectful to Utah teachers who have paid the price in time and tuition to become fully licensed. They should not be expected to mentor for free those with only a subject matter degree.   Your point here, that teaching pedagogy involves learning how to serve mainstreamed special education students is critical for autistic  students.  APT seems like a bandaid approach to the teacher shortage.  The teacher shortage will end when we pay teachers a living wage and honor them with the respect they deserve.

Safety:  Safety, both for our children and for those in charge of educating them, is always an important issue. For example, wandering is an issue for autistic children. What are your suggestions for better ensuring safety for our particular population within the school environs?

Janet A Cannon:  I am a friend of John & Carmen Pingree, who founded the Pingree school for children with Austism.  I well remember John telling about a terrifying experience when their autistic son, Brian, wandered off.  The burden of assuring an individual child’s safety at school in terms of wandering should be addressed in that child’s IEP.  Make sure that a document is in place requiring the school to notify parents of any wandering incident and document any incidents that may occur.  Make sure that things that may trigger wandering, like water in lakes, pools, etc. are blocked off so children don’t have access to them.  Security staff at the school should be made aware of a child who might wander off and know how best to handle that particular child should any incident occur.  If possible, have therapists address wandering in their sessions.

Personal experience:  The autism rate in Utah is 1 in 54.  Your family and social circle doesn’t have to be very large before it includes someone with autism.  If you want to share any personal or professional experience with autism, please do so.  

Janet A Cannon:   My academic background is speech/language pathology.  I have a Masters Degree and a national Certificate of Clinical Competency.  I worked several years in Davis School District.  I have worked with autistic children as a speech pathologist.  My choice of a major was impacted by the fact that I have a brother who is mentally handicapped. Almost two years ago, my own little granddaughter was born with Down’s Syndrome.  Many children have special needs.  I am very concerned that the rate of autistic children seems to be increasing at a dramatic rate, especially in Utah.  Among that number is my best friend’s little granddaughter just diagnosed at age 4.  Each of these is a special, unique individual who are there to bless our lives and they are counting on us to do the very best we possibly can to make their lives happy and meaningful.         







Survey Response: Chadwick H. Fairbanks III Candidate for US Congressional District #1



Candidates for the November 2016 elections were given the opportunity to answer a few questions relating to autism.  The following are Chadwick H. Fairbanks III's responses.



Healthcare:  44 states (including Utah) have enacted legislation requiring health insurance to cover autism.  State law cannot affect self-funded plans, which fall under federal ERISA rules.  Would you support adding autism coverage to federally-regulated plans?

Chadwick Fairbanks III:  Conditionally yes, I would only support adding autism to Federally-regulated health plans if the regulations allowed for alternative treatment of autism symptoms to include detoxification of GI tract, brain, liver, etc. using a variety of proven natural remedies as well as allowances for dietary changes.

Education:  Over the past 4 decades, the ADA and IDEA have dramatically improved access to education for students with disabilities, including those with autism.  Many students with autism need the support of an IEP or 504 plan in order to access an education.  Although IDEA requires states to provide services and provides some federal funding, that funding has never reached the originally intended 40%.  In 2016, IDEA is funded at around 16%.  Would you support efforts to increase federal funding for IDEA?

Chadwick Fairbanks III:  No, I don't support expanding Federal funding for anything not inside the Federal Government's purview which education is not as well as most things.  Removing D.C. from local and state governance and returning ALL of the funds under Federal control back to the States solves many, many problems.

Employment:  In the years following high school, 2/3rds of people with autism are neither employed nor continuing education.  “H.R. 5587: Strengthening Career and Technical Education for the 21st Century Act” passed the House in September.  It supports career and technical education (CTE) programs and helps students with autism gain skills necessary for employment.  Do you support such legislation?

Chadwick Fairbanks III:  No, I don't support spending ANY Federal money on anything not Federal.  The Federal Government only needs to collect money to perform the very little function it's designed to do.  Most of the money that is brought to D.C. needs to be returned to the States where each state can decide how best to take care of their autistic population.


Wandering:  Almost half of children with autism wander from a caregiver.  “S. 2614: Kevin and Avonte’s Law of 2016” passed the Senate in July.  It provides federal support for equipment and training for first responders and schools to combat wandering.  Do you support such legislation?

Chadwick Fairbanks III:No, same as answer 3.  Also, autism is a spectrum disorder because it's a neurological auto-immune disorder almost entirely brought on by environmental triggers, i.e. - vaccines. Furthermore, it is curable, just not with pharmaceuticals!  If this is the best information being brought forward by the Utah Autism Coalition, then I suggest that parents look elsewhere for the facts about how autism is really caused and how it can really be cured.

Personal experience:  The autism rate in Utah is 1 in 54.  Your family and social circle doesn’t have to be very large before it includes someone with autism.  If you want to share any personal or professional experience with autism, please do so.

Chadwick Fairbanks III:  Our first son is on the autism spectrum and has other vaccine damage to his body.  Our second son who didn't participate in vaccines is quite robust in his health and intellectual acuity.  Again, it would behoove parents to find out how vaccines attack gut health which attacks brain health.  Everyone is being lied to and experimented on by Big Government and Big Pharma.  I'd be happy to discuss off-line with anybody interested, but the facts, details, and bibliography are too exhaustive for this communication.





Survey Response: Norm Thurston Candidate for UT House 64

Survey Response: Norm Thurston Candidate for UT House 64


Candidates for the November 2016 elections were given the opportunity to answer a few questions relating to autism.  Here is Norm Thurston's response.

Norm Thurston:  "This is a very complex and comprehensive set of questions.  I would be happy to discuss them with you at any point, but to do them justice, I am afraid that it would involve a lot more writing than I have time to undertake.  If you are interested in setting up a time for an interview, I would be happy to do that. "

Survey Response: Kathie Darby Candidate for UT House 9

Survey Response:  Kathie Darby Candidate for UT House 9

Candidates for the November 2016 elections were given the opportunity to answer a few questions relating to autism.  The following are Kathie Darby's responses.

Health Insurance:  In 2014, the Utah legislature passed a law requiring some state-regulated health insurance plans to cover autism, including a limited amount of therapy for children ages 2-9.  This law went into effect in 2016 and will sunset in 2019.  Would you consider renewing it or expanding it in any way, such as increasing age or coverage limits?

Kathie Darby:  I would definitely vote to renew it and be open to expanding it based on the circumstances, maybe a provision for case by case analysis.

Medicaid:  In the past year, Medicaid has begun covering autism up to age 21 for people who meet the income requirements.  What is your position on Medicaid expansion?

Kathie Darby:  The expansion should have been passed in it’s entirety in the last session.  It makes good sense in many ways, including people with disabilities and children; and autism is an important part of it.

Education:Special Education is very important to students who need it.  Utah “needs assistance” when it comes to meeting the requirements of IDEA.  What would you change about the Utah education system, both in general and special education?

Kathie Darby:  I would increase spending for education in general, not by increasing taxes but by spending the available money more efficiently.  I would propose to pay teachers more, provide ALL needed supplies and reduce class size.  Special needs will always be important to me, fitting right into the plan.

Financial Planning:  Utah passed legislation in 2015 to help disabled Utahns and their families plan for the future through ABLE accounts (similar to 529 college savings plans).  They are not yet available.  Do you support efforts to make sure that disabled Utahns can access ABLE accounts?

Kathie Darby:  I would definitely support efforts to give Utahns with disabilities access to this important account program.  I don’t understand why it is taking so long to provide this, but would investigate.

Police:  People with autism may have difficulty understanding and complying with police orders.  They may also be prone to meltdowns or be overwhelmed by lights and sirens.  Two examples of where this can lead are reported here and here.  Crisis Intervention Team (CIT) trained officers are recognized to be the most capable of responding to situations involving the mentally ill, and Utah has an excellent CIT program.  The Utah 911 board has considered adopting a system (Smart911) that, in addition to other benefits, would help ensure that CIT officers are dispatched when needed by letting citizens pre-register with 911 and sharing their information with dispatchers and officers when a call is made.  What are your thoughts on the CIT program?  Would you support the adoption of a system like Smart911?

Kathie Darby:  I think this is something that has been needed for a very long time and would support the adoption of this program as quickly as financially possible.  Many issues could be resolved easier and more safely with proper training.

Personal experience:  The autism rate in Utah is 1 in 54.  Your family and social circle doesn’t have to be very large before it includes someone with autism.  If you want to share any personal or professional experience with autism, please do so.  

Kathie Darby:  As a member of the Board of Directors at Enable Utah, a 501c3 organization helping people with disabilities for nine years and working with Special Olympics for 20 years; I have many great experiences with a lot of wonderful people on the spectrum.  I started 40 years ago volunteering with people with disabilities when I lost a child due to birth defects.  It changed my life and focus.  I will always be an advocate; as a Senior Operation Manager at IRS, I hired as many people as I could with various disabilities, even helping win the Governor’s Award.


Survey Response: Paul Shulte Candidate UT House 39

Survey Response Paul Shulte:  Candidate UT House 39

Candidates for the November 2016 elections were given the opportunity to answer a few questions relating to autism.  The following are Paul Shulte's responses.

Health Insurance:  In 2014, the Utah legislature passed a law requiring some state-regulated health insurance plans to cover autism, including a limited amount of therapy for children ages 2-9.  This law went into effect in 2016 and will sunset in 2019.  Would you consider renewing it or expanding it in any way, such as increasing age or coverage limits?

Paul Shulte:   I would definitely support children getting the appropriate counseling. I would be interested in increasing the age.

Medicaid:  In the past year, Medicaid has begun covering autism up to age 21 for people who meet the income requirements.  What is your position on Medicaid expansion?

Paul Shulte:  I would like to see full Medicaid expansion.

Education:  Special Education is very important to students who need it.  Utah “needs assistance” when it comes to meeting the requirements of IDEA.  What would you change about the Utah education system, both in general and special education?

Paul Shulte:   I believe we need to aggressively get more funding for education to meet the needs of all children. This is the most important issue for our state!

Financial Planning:  Utah passed legislation in 2015 to help disabled Utahns and their families plan for the future through ABLE accounts (similar to 529 college savings plans).  They are not yet available.  Do you support efforts to make sure that disabled Utahns can access ABLE accounts?

Paul Shulte:  I support access to ABLE accounts.

Police:  People with autism may have difficulty understanding and complying with police orders.  They may also be prone to meltdowns or be overwhelmed by lights and sirens.  Two examples of where this can lead are reported here and here.  Crisis Intervention Team (CIT) trained officers are recognized to be the most capable of responding to situations involving the mentally ill, and Utah has an excellent CIT program.  The Utah 911 board has considered adopting a system (Smart911) that, in addition to other benefits, would help ensure that CIT officers are dispatched when needed by letting citizens pre-register with 911 and sharing their information with dispatchers and officers when a call is made.  What are your thoughts on the CIT program?  Would you support the adoption of a system like Smart911?

Paul Shulte:  Law enforcement officer need to be provided training on how to work with citizens that have disabilities to ensure fair treatment and safety for all.

Personal experience:  The autism rate in Utah is 1 in 54.  Your family and social circle doesn’t have to be very large before it includes someone with autism.  If you want to share any personal or professional experience with autism, please do so.

Paul Shulte:   I am a life long educator with over 31 years of experience. I was a special education teacher for 12 years. I became a teacher to help students with special needs. I have worked
with many students with autism.



Survey Response: Brian Shiozawa Candidate for UT Senate 8

Survey Response:  Brian Shiozawa  Candidate for UT Senate 8


Candidates for the November 2016 elections were given the opportunity to answer a few questions relating to autism.  The following are Brian Shiozawa's responses. 
Health Insurance:  In 2014, the Utah legislature passed a law requiring some state-regulated health insurance plans to cover autism, including a limited amount of therapy for children ages 2-9.  This law went into effect in 2016 and will sunset in 2019.  Would you consider renewing it or expanding it in any way, such as increasing age or coverage limits?
Brian Shiozawa:  We need to look at increasing the age of eligibility for teenagers as the next step.  Then, look at young adult treatment.
Medicaid:  In the past year, Medicaid has begun covering autism up to age 21 for people who meet the income requirements.   What is your position on Medicaid expansion?
Brian Shiozawa:  As you know I successfully sponsored the Health Utah plan in the Senate for two sessions 2014 and 2015.  The House blocked this, but I intend to continue the fight for this.
Education:  Special Education is very important to students who need it.  Utah “needs assistance” when it comes to meeting the requirements of IDEA.  What would you change about the Utah education system, both in general and special education?
Brian Shiozawa:First of all, we need better funding in general for public education and I support a fair and sustainable source for education funding esp. K-12.  Also, we need to continue supporting the vital special education programs.
Financial Planning:  Utah passed legislation in 2015 to help disabled Utahns and their families plan for the future through ABLE accounts (similar to 529 college savings plans).  They are not yet available.   Do you support efforts to make sure that disabled Utahns can access ABLE accounts?
Brian Shiozawa:  ABLE yes.
Police:  People with autism may have difficulty understanding and complying with police orders.  They may also be prone to meltdowns or be overwhelmed by lights and sirens.  Two examples of where this can lead are reported here and here.  Crisis Intervention Team (CIT) trained officers are recognized to be the most capable of responding to situations involving the mentally ill, and Utah has an excellent CIT program.  The Utah 911 board has considered adopting a system (Smart911) that, in addition to other benefits, would help ensure that CIT officers are dispatched when needed by letting citizens pre-register with 911 and sharing their information with dispatchers and officers when a call is made.  What are your thoughts on the CIT program?  Would you support the adoption of a system like Smart911?CIT is a valuable resource that is underutilized.  Done well, the program helps people promptly and the  interventions can prevent ER visits, unnecessary hospitalizations and stabilize patients sooner than we are conventionally doing now.  The enhanced 911 programs may have significant merit.
Brian Shiozawa:CIT is a valuable resource that is underutilized.  Done well, the program helps people promptly and the  interventions can prevent ER visits, unnecessary hospitalizations and stabilize patients sooner than we are conventionally doing now.  The enhanced 911 programs may have significant merit.
Personal experience:  The autism rate in Utah is 1 in 54.  Your family and social circle doesn’t have to be very large before it includes someone with autism.  If you want to share any personal or professional experience with autism, please do so. 
Brian Shiozawa:  You know that I support the efforts of the UAC in your vital work for the community.  Please advise how I can help. 


Survey Response: Amy Morgan Candidate for UT House 11

Survey Response Amy Morgan Candidate for UT House 11

Candidates for the November 2016 elections were given the opportunity to answer a few questions relating to autism.  The following are Amy Morgan's responses. 

Health Insurance:  In 2014, the Utah legislature passed a law requiring some state-regulated health insurance plans to cover autism, including a limited amount of therapy for children ages 2-9.  This law went into effect in 2016 and will sunset in 2019.  Would you consider renewing it or expanding it in any way, such as increasing age or coverage limits?


Amy Morgan:   I would support renewal and sustaining of the law.  I think all insurance plans should be required to cover autism therapy. 


Medicaid:  In the past year, Medicaid has begun covering autism up to age 21 for people who meet the income requirements. What is your position on Medicaid expansion?
Amy Morgan:  I support Medicaid expansion, and think that autism should be covered to the age of 27, as is standard coverage under the ACA.
Education:  Special Education is very important to students who need it.  Utah “needs assistance” when it comes to meeting the requirements of IDEA.  What would you change about the Utah education system, both in general and special education?
 Amy Morgan:  I would support giving schools, and education, back to educators.  Educators know what they are doing, and do it well, and continual regulations and changing standards implemented by non-educators are not helping anyone, including those in the special education programs.  Students are loved and taught by amazing people.  Let them do their job, and the results will, in my opinion, always speak for themselves.

Financial Planning:  Utah passed legislation in 2015 to help disabled Utahns and their families plan for the future through ABLE accounts (similar to 529 college savings plans).  They are not yet available.   Do you support efforts to make sure that disabled Utahns can access ABLE accounts?

Amy Morgan:  100%, YES.

Police:  People with autism may have difficulty understanding and complying with police orders.  They may also be prone to meltdowns or be overwhelmed by lights and sirens.  Two examples of where this can lead are reported here and here.  Crisis Intervention Team (CIT) trained officers are recognized to be the most capable of responding to situations involving the mentally ill, and Utah has an excellent CIT program.  The Utah 911 board has considered adopting a system (Smart911) that, in addition to other benefits, would help ensure that CIT officers are dispatched when needed by letting citizens pre-register with 911 and sharing their information with dispatchers and officers when a call is made.  What are your thoughts on the CIT program?  Would you support the adoption of a system like Smart911?

Amy Morgan:   I would fully support a program like Smart911.  I think education is key in any situation, and CIT trained officers are educated in ways others aren't which makes them much more capable to handle extenuating circumstances.  Hats off to them and let's let them do their jobs! 

Personal experience:  The autism rate in Utah is 1 in 54.  Your family and social circle doesn’t have to be very large before it includes someone with autism.  If you want to share any personal or professional experience with autism, please do so. 

Amy Morgan:   I have thought about this often... the fact that not too long ago, autism did not have a name or a diagnosis.  Most of us had not heard of Autism or Asperger's until the '90's.  I think of all the people who were forced to live without resources and help, because there weren't any.  I appreciate, so much, the work and attention that is given autism and the autistic spectrum, and the best therapies and practices that allow those living with the challenge to have full, productive lives and contribute so fully to society.






 

Survey Response: Bruce Cutler Candidate for UT House 44

Survey Response:  Bruce Cutler Candidate for UT House 44


Candidates for the November 2016 elections were given the opportunity to answer a few questions relating to autism.  The following are Bruce Cutler's responses. 

Health Insurance:  In 2014, the Utah legislature passed a law requiring some state-regulated health insurance plans to cover autism, including a limited amount of therapy for children ages 2-9.  This law went into effect in 2016 and will sunset in 2019.  Would you consider renewing it or expanding it in any way, such as increasing age or coverage limits?
Bruce Cutler:  Yes - I would be happy to work with Senator Shiozawa to see what needs to be done in this area.
Medicaid:  In the past year, Medicaid has begun covering autism up to age 21 for people who meet the income requirements.   What is your position on Medicaid expansion?
Bruce Cutler:  Yes - I would like us to move forward with Medicaid expansion based on the Governor's Healthy Utah plan features. We will need cooperation from Washington in order to make this happen. So far, they have not been cooperative. Whether or not we can tailor a program that fits the desires of the citizens on Utah will depend on who wins the White House and takes over the ACA, or does away with it.
Education:  Special Education is very important to students who need it.  Utah “needs assistance” when it comes to meeting the requirements of IDEA.  What would you change about the Utah education system, both in general and special education?
Bruce Cutler:  This is such a broad subject that all I'm going to say here is that we need to provide a fair and equitable education to all students, regardless of need. I will do all that I can to support all students.
Financial Planning:  Utah passed legislation in 2015 to help disabled Utahns and their families plan for the future through ABLE accounts (similar to 529 college savings plans).  They are not yet available.   Do you support efforts to make sure that disabled Utahns can access ABLE accounts?
Bruce Cutler:  I will need more information on this particular subject. What was the bill # that we passed? Why is it not yet available? Is it a funding issue or something else? Why is it different than a 529 plan?  (More information has been provided and as soon as he provides more in-depth response on this topic we will update the responses).
Police:  People with autism may have difficulty understanding and complying with police orders.  They may also be prone to meltdowns or be overwhelmed by lights and sirens.  Two examples of where this can lead are reported here and here.  Crisis Intervention Team (CIT) trained officers are recognized to be the most capable of responding to situations involving the mentally ill, and Utah has an excellent CIT program.  The Utah 911 board has considered adopting a system (Smart911) that, in addition to other benefits, would help ensure that CIT officers are dispatched when needed by letting citizens pre-register with 911 and sharing their information with dispatchers and officers when a call is made.  What are your thoughts on the CIT program?  Would you support the adoption of a system like Smart911?
Bruce:  Cutler:  Looks like a great program !  Yes, I'd like to know more about it.  The more we can do proactively in this regard the better.  When an emergency arrives it is usually too late to provide this information because of the stress of the emergency.  Our police and EMts need to be trained to help those with Autism and other physical and mental challenges.  Thanks for providing this link.
Personal experience:  The autism rate in Utah is 1 in 54.  Your family and social circle doesn’t have to be very large before it includes someone with autism.  If you want to share any personal or professional experience with autism, please do so. 
Bruce Cutler:  I recognize the needs of individuals with unique and challenging life situations. We are not all handed the same set of capabilities and challenges. Helping those who need our help is a Christian principle which I fully support.










Survey Response: Christine Passey, Candidate for UT House 44


Survey Response:  Christine Passey, Candidate for UT House 44 

Candidates for the November 2016 elections were given the opportunity to answer a few questions relating to autism.  The following are Christine Passey’s responses. 

Health Insurance:  In 2014, the Utah legislature passed a law requiring some state-regulated health insurance plans to cover autism, including a limited amount of therapy for children ages 2-9.  This law went into effect in 2016 and will sunset in 2019.  Would you consider renewing it or expanding it in any way, such as increasing age or coverage limits?
Christine Passey:    Working on this legislation is what inspired me to run for office in the first place. Watching everyday Utahns from across the state take down the insurance lobby was inspiring to me. This inspiration is what led me to file for office a short 18 hours after we passed the insurance mandate in 2014.  There is no question that I would expand both the age limit and the coverage limits of this law. I have spoken with Senator Shiozawa about this and plan on being a lead advocate on this legislation.

Medicaid:  In the past year, Medicaid has begun covering autism up to age 21 for people who meet the income requirements. What is your position on Medicaid expansion?

Christine Passey:  The Healthy Utah plan, that 70% of Utahns supported, was killed because of political infighting. It would have covered roughly 280 thousand people. Instead a plan that is covering less than 10 thousand people passed while we are all still paying the taxes of the full Medicaid expansion.  I am in full support of the Medicaid expansion and have plans to work with Senator Shiozawa on the legislation he will be introducing in the Senate.

Education:  Special Education is very important to students who need it.  Utah “needs assistance” when it comes to meeting the requirements of IDEA.  What would you change about the Utah education system, both in general and special education?

Christine Passey:  Without question Utah’s education system needs more funding. I want to increase the severance tax rate on oil companies and similar companies and put the increased revenue into education. Our severance tax rate is less than half the rate of surrounding states. Right now we are basically giving oil companies a tax break at the expense of our schools.  Specific to special education we need to keep our good teachers who are burning out. We also need to provide students more time with professionals like speech therapists, occupational therapist, etc. An increase in the calculation of the WPU for special education students would help bring in more services and resources to the classrooms.

Financial Planning:  Utah passed legislation in 2015 to help disabled Utahns and their families plan for the future through ABLE accounts (similar to 529 college savings plans).  They are not yet available.   Do you support efforts to make sure that disabled Utahns can access ABLE accounts?

Christine Passey:  I have advocated national for the ABLE act and I testified at the hearing for the Utah ABLE act. Before I testified I was told the committee had plans to remove the $500 Utah tax credit that was offered as part of the ABLE act. In my testimony I explained that families of children with special needs live one socio-economic class lower than their peers without children with special needs. Because of this fact I asked the committee to keep the $500 tax credit. The law passed with the inclusion of the $500 tax credit. I will do whatever I can to help implement the ABLE act.

Police:  People with autism may have difficulty understanding and complying with police orders.  They may also be prone to meltdowns or be overwhelmed by lights and sirens.  Two examples of where this can lead are reported here and here.  Crisis Intervention Team (CIT) trained officers are recognized to be the most capable of responding to situations involving the mentally ill, and Utah has an excellent CIT program.  The Utah 911 board has considered adopting a system (Smart911) that, in addition to other benefits, would help ensure that CIT officers are dispatched when needed by letting citizens pre-register with 911 and sharing their information with dispatchers and officers when a call is made.  What are your thoughts on the CIT program?  Would you support the adoption of a system like Smart911?

Christine Passey: The CIT program is a very impressive program and I have the opportunity of being involved in this program and similar programs as the Coordinator for Disability Rights in the Salt Lake City Mayor’s Office. On top of the CIT program I believe all police officers should have additional training on autism, developmental disabilities and mental illness. I am proud to have the opportunity to engage in discussions on how to provide more of these types of trainings to police officers.

As for the Smart911 program I'd like to understand it more before I make an absolute statement about it. I am part of the Emergency Management Team for Salt Lake City and a member of the Emergency Operation Center when activated. My entire role in this is to ensure people with access needs and disabilities are considered and taken care of in all aspects of emergency response. As I've attended FEMA trainings and worked with first responders I have learned there is a lot of concern with registry systems. I think a full discussion on how it will be implemented and how it will be used is necessary.

Personal experience:  The autism rate in Utah is 1 in 54.  Your family and social circle doesn’t have to be very large before it includes someone with autism.  If you want to share any personal or professional experience with autism, please do so. 

Christine Passey:  My 8 year old daughter Skylynn has autism. She is my inspiration for getting involved in politics to begin with. As an autism parent I understand autism better than any other legislator possibly could. My advocacy began as the Vice President of the UAC from 2011 to 2014. I stepped down from the UAC at the point I ran for office. I am dedicated to fighting for autism and all disabilities. It is my reason for running for office and will be my passion when I am elected.  We need a legislator that understands autism – not just one that cares about it!

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.