Protect Medicaid – Give 5 minutes

The Graham-Cassidy bill is gaining momentum in the Senate. This effort to repeal insurance protections includes cuts to Medicaid that will be devastating to people with disabilities. Avalere study shows impact of the bill will result in 15% cut in funding for people with disabilities and 31% cut for children.

It’s essential that individuals, family members, friends, and advocates make their voices heard NOW.

Please take a few minutes today to call your U.S. Representative here particularly if it’s one of these Representatives:

Personal Story

Personal stories are the most effective form of advocacy. Talk about why is Medicaid important to you.

  • If you or a family member are on Medicaid (including a waiver), what are the most important services to you? What difference has that made in yours and/or your family member’s lives?
    • Access to critical healthcare or therapies
    • Ability to receive in-home supports, residential supports or live independently
    • Ability to work or go to a day program (so your family can work)
  • What was your and/or your family member’s lives like before receiving Medicaid services?
  • Are you or a family member on a waitlist for Medicaid services? How would getting services make a difference in your lives?

Or consider using this easy script.

Talking Points

  1. The latest healthcare bill being considered by the Senate, the Graham-Cassidy proposal, would restructure Medicaid through per capita caps and would lead to devastating cuts in Medicaid.
  2. The Graham-Cassidy bill would reduce federal funding to states resulting in a 15% decrease of Medicaid spending for people with disabilities and a 31% decrease of Medicaid spending for children.
  3. 11 million people with disabilities rely on Medicaid for critical services that help them live and participate in their community.
    • Ex: nursing and personal care services, specialized therapies, intensive behavioral health services, special education services, employment supports, and other needed services that are unavailable through private insurance.
  4. Proposed cuts to Medicaid is already forcing WA to reduce services, cut optional services, restrict eligibility, and increase waiting lists.
  5. People with disabilities will be disproportionally harmed by Medicaid cuts.  Care for people with disabilities makes up a significant part of state Medicaid budgets due to their long term care needs.
  6. The home and community based services (HCBS) on which people with disabilities rely to live and participate in their communities are especially at risk because they are optional and could be completely eliminated.
  7. The Graham-Cassidy bill ends an important program for home and community based services (called Community First Choice) while at the same time requiring states to maintain funding for institutions.
  8. The bill also would allow states to waive the ACA’s protections for people with pre-existing conditions (including people with disabilities) and the requirement for plans to cover “essential health benefits” that help people with disabilities, like behavioral health and neurodevelopment services.
  9. Please oppose the Graham-Cassidy bill or any bill that caps or cuts Medicaid, cuts healthcare for people with disabilities, and does not protect people with pre-existing conditions.
  10. Instead work in a bi-partisan fashion to protect and improve access to healthcare

Action Alert-Please contact the Office of Insurance Commissioner

Under the Office of Insurance Commissioner(OIC)’s proposed rules(attached below), developmentally disabled children could receive very limited medically necessary therapy before coverage would run out. Under that scenario, children could lose all the progress made as a result of the therapy until they have coverage again the next calendar year.  Please take action asking the OIC to address this disparity.

  • Please call Meg L. Jones (Policy & Rules Manager, Office of Insurance Commissioner) at (360) 725-7170 or e-mail MegJ@OIC.WA.Gov .

Let M. Jones know,  as a constituent,  you need the OIC to add language to the rulemaking section on “Habilitative Services” that the definition of “habilitation services” excludes any service that is a “mental health service” under our state’s Mental Health Parity Act. Without that clarification, health insurers will argue that the OIC intended to allow visit limits to be imposed on neurodevelopmental therapies including those to treat DSM-IV conditions.  Let her know how detrimental this is to your loved one with autism or developmental disability.

Rule making that results in a combined annual 25 visit limit for neurodevelopmental therapies to treat DSM-IV conditions would result in inadequate — even illusory – coverage. Neurodevelopmental therapies are the essential health benefits for developmentally disabled children.

Ideally, the final rule would expressly include ABA and neurodevelopmental therapies to treat DSM-IV conditions as “mental health services” consistent with the Parity Act, as we saw in an earlier version of these rules.

  • Please forward this note to 25  family members, friends, therapists and coworkers and ask them to please do the same.


Thank your for your consideration.

Arzu Forough


Meg Jones supporting letter from Sirianni Youtz & Spoonemore

Exhs. 1-4 to Meg Jones letter-091112

Proposed Rule Making, p.11 (iii)

Safety in numbers, connect your networks towards greater stability

As drivers become more accustomed to seeing walkers and cyclists on the road, they become more attentive and cautious overall. Instead of “get out of the way” campaigns, we now see messages like “THINK, Slow Down!” or “Kill your Speed, Not a Child”, that place the onus on drivers to increase their awareness of walkers and cyclists.

Research suggest doubling the number of cyclists on the road tends to bring about a 1/3 drop in the per-cyclist frequency of a crash with a motor vehicle. By the same token, tripling the rate of cycling cuts the crash rate in half.


With that in mind…think of crashes as Health Insurance Benefits’ Denials!


Families, physicians and therapists have “CRASHED”so often in trying to get services covered for a patient with autism that they now don’t even bother to try! Clinical amelioration of adverse neurological, sensory or physical impact of a brain disorder is no different than clinical amelioration of adverse impact diabetes or Leukemia.


Please don’t get out of the road!  Please don’t get discouraged! Connect your networks with ours, double & triple our effective advocacy towards improved access to effective medical and educational services for our loved ones with ASD’s.


Here’s how can you help?

  1. Call or write to everyone YOU know in your community and ask them to join our grassroots advocacy coalition.  Let them know connected & tripled in size, we can better avoid “crashes” with private insurance, Medicaid and schools!
  2. Join us on Facebook, meet families, professionals and self-advocates online, share resources, exchange ideas, or ask for help!
  3. Scroll through our online resources for families, download and share with others!


There’s safety in numbers!  Let’s connect our networks towards greater stability for our loved ones’ future here in Washington state.



Arzu Forough






Autism insurance coverage, family-by-family, plan-by-plan and state-by-state

The 6th Annual Autism Law Summit, dedicated to the passage, implementation and enforcement of meaningful autism insurance reform across the nation convened last week at the University of Utah’s Susan J. Quinney School of Law. Lorri Unumb, Autism Speaks VP of State Government Affairs, facilitated the Summit, as she has for the past six years.

The Summit has evolved from an informal gathering of a handful of national advocates, to a capacity-level event from 33 states. Once again, parents, providers, attorneys legislators and regulators, create remarkable momentum in the effort to create a system where individuals diagnosed with an ASD can access coverage for the life-changing treatments they need.

The “Speak out” award to Lou Melgarejo, producer of the “Fixing” Autism video in honor of his daughter Bianca and the difficulties faced by families in gaining insurance coverage for needed therapies set the stage for the jam packed summit.

Utah Representative Merlynn Newbold and Professor Bonnie Mitchell from the S.J. Quinney College of Law, welcomed attendees prior to Lorri Unumb’s presentation,” Autism Insurance Reform Across America.” Five states that passed legislation since the previous Summit: Arkansas, Virginia, West Virginia, Rhode Island and California received honorable mention.

MI State Representative Jason Grill presented “Politics 101” relating lessons learned from his experience in the Missouri legislature’s passage of autism insurance reform.

Bryan Davey, PhD, BCBA-D (AZ) and Colleen Allen, PhD, CCC/SLP (MI); employer representatives Doug Green of DTE Energy (MI) and Jeremy Shane of HealthCentral(MD) and parent advocate Karen Fessel, Dr. PH(CA) presented “Convincing Self-Funded Companies to Add an Autism Benefit.”

Misty Bloom, JD of the Behavior Analyst Certification Board(FL); Andrea Chait, PhD, BCBA-D, NCSP (RI), and Jill McLaury, MS BCBA (WV) gave an overview of the provider credentialing issues.

I joined attorneys Ele Hamburger (WA), Dan Unumb (SC) and Dave Honigman (MI) for an update on litigation efforts against insurers.

Billy Edwards, MS, BCBA (TX); Mike Wasmer (KS), and Amy Weinstock (MA) shared their experiences implementing autism insurance laws in their respective states.

Adam Cole, JD, General Counsel, CA Department of Insurance; and Angela Nelson, Director of Consumer Affairs, and Melissa Palmer, Legislative Director, from the MI Department of Insurance and Jacqueline Eckert, MedClaims Liaison (PA) discussed “Enforcement of Coverage”.

A mock legislative hearing on autism insurance reform, provided an opportunity for attendees to experience first-hand the challenges frequently experienced by advocates.

Insights by the Autism Speaks Government Relations team specific to grassroots development, communications, policy, implementation and enforcement was interspersed throughout the summit.

As all of us headed back home to different parts of the country, colleagues, old and new shared smiles and hugs of encouragement. Once again, the connection of hope and ideas has been sparked and 2012 is destined to be another year of hard-fought progress in the effort to ensure access to autism insurance coverage, family-by-family, plan-by-plan and state-by-state.


Shayan’s Law Update

Full Mental Health Parity passed in Washington state in 2005.  It was phased in over 5 years and all state regulated plans renewing after 7/1/2010 are legally obligated to  cover medically necessary treatments for individuals with a DSM diagnosis for life, with the same dollar cap as medical & surgical benefits. WA MHP is only applicable to plans regulated by WA state laws, fully funded plans and Public Employees Benefits.

Shayan’s Law was brought forward because insurance companies have not been following the letter and spirit of this law for individuals with autism.  This has prompted legal experts to look into this very closely.  Based on the information available to us:

  1. Diagnosis and treatment should be covered if referrals (prescribed testing and treatment) came from a licensed physician or licensed psychologist.
  2. Treatment should be provided by a licensed therapist.
  3. Unlicensed providers (i.e. nationally certified behavior specialists and behavior therapy assistants) must become licensed through Washington State department of health.

Navigating this system can be difficult, for help with the process visit:

We are awaiting the outcome of court cases testing Mental Health Parity and depending on the outcome have to be prepared to block any action that will limit protection under Mental Health Parity for those with autism.   If you have any questions, concerns or comments, please post to the link above.

All my best,

Arzu Forough