Paying for autism, can we really afford it?

Disclaimer:  My desire is to keep Parenting Autism focused on parenting subjects but often parenting a child with autism and politics blur the lines and I have to discuss the boarder implications of policy decisions.  Thank you for your continued support.

Over the last few months I have been working with a group of parents and professionals (VT CAIR) on lobbying the Vermont legislature to not repeal the autism insurance reform law that passed and  was signed into law  last year.   ACT 127 (aka Autism Insurance Reform) mandates insurance companies and Medicaid to pay for autism services (behavioral therapy, occupational therapy, physical therapy, speech therapy) for children 18 months old to six years old.  After last session we felt good, we got some needed legislation passed with some concessions but that is politics, right? 


Then we went into the current session (2011) with a new Democratic Governor and we thought, great!  ACT 127 was ready to expand to include individuals above six years old, but we got stopped right on the State House steps.  Governor Shumlin and the Democratic house and senate had not put the money into the budget to fulfill their Medicaid commitment and their best option was repealing ACT 127.  We said no, no, we will compromise and this year we will take just private insurance ($.70 a month per premium holder) and then next year we can implement Medicaid coverage.  Even that got months of debate.


This is where I have problem, whether it is a political, moral, spiritual, or intellectual problem I am not sure, you can decide.  Here is my dilemma: for the price of an apple every month we decided children with autism (and their families) are not worth the medical treatment they deserve and need. 


How can this happen in a liberal, New England state in the richest country in the world?  I don't know.  The political, cynical side of me understands that the vulnerable are always targeted in tough economic times, but the hopeful side fights back with confusion.  How did our nation, the great "melting pot", arrive here, where children are not getting medical care they need.  We are all responsible because for far too long in this country we turn the other way and say, "well, that's not my problem."


We get consumed with our busy lives and end-up walking around with blinders on, not seeing that our neighbors need help.  This is not a Vermont problem.  Accessing proper treatment for children with autism exists all across our nation.  Some states are slowly passing legislation to mandate insurance companies to pay for autism services, but more needs to be done.



The longer we wait the higher the price tag.  Not just in the children getting denied access to healthcare but in real dollars and cents.  According to the Autism Society of America, " (the) cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention."  As a society we are making a choice to limit opportunities to children with autism and to assume the skyrocketing cost of adult care unless we look at our fellow citizens and take care of each other.

Related blog post:  Vermont State House Passes Autism Insurance Bill

Autism Awareness Month-- Parenting Autism Workshops

Today marks the first day of National Autism Awareness Month and the people here, behind-the-scenes at Parenting Autism decided we wanted to give back to the Autism Community by offering a FREE parenting workshop on every Saturday in April. Parents from all over Vermont and one family from Quebec have been calling and emailing to register.

As we get closer to our first workshop in Burlington, VT this Saturday the buzz of excitement grows because we know families are not getting enough support which results in splintered families, families that don’t work, and relationships that don’t flourish. We want to help you create a meaningful family while preparing your child(ren) for adulthood. Sign-up today at angela@parenting-autism.org

Burlington, Vermont Workshop
Saturday, April 4th, 2009
8:30am-12:30pm (light fare provided)
MAIN STREET LANDING PERFORMING ARTS CENTER
The Great Room
Corner of Lake & College Streets
Sixty Lake Street
Burlington, Vermont 05401

Rutland, Vermont Workshop
Saturday, April 11th, 2009
9:30am-1:30pm (lunch provided)
RUTLAND FREE LIBRARY
The Fox Room
10 Court Street
at the intersection of Court and Center Streets
Rutland, VT

St. Albans, Vermont Workshop
Saturday, April18th, 2009
9:00am-1:00pm (lunch provided)
NORTHWESTERN COUNSELING AND SUPPORT SERVICES
130 Fisher Pond Road, St. Albans, VT
(the new building)

Norwich, Vermont Workshop
April 25th, 2009
10:00am-2:00pm (light fare provided)
UPPER VALLEY EVENTS CENTER
Route 5 SouthNorwich VT

Here are some highlights from our workshop, Build Your Family:

• After Diagnosis: Grief, depression, anxiety, sadness is a host of emotions that a family must continue to face throughout the lifespan, not just after diagnosis — we help with dealing with emotions and how to make plans to move forward. Including connecting to your community to gain a support network and find “your people”.
  
• Build An Inclusive School Team: Through strong team building skills and meeting planning we teach you how to have a working team at school and at home.
  
• Create Your Family: What are your family values? How does your life support the family values? Learn how to create a weekly family meeting, family dinners, and family outings for everyone.
  
• Your Child: Learn how to prepare your child for a meaningful and productive happy adulthood now at whatever age they are. Teaching life skills in way your child can understand.
  
• Medical Issues: Learn how talk to doctors so they will understand. How does pain affect children with autism and what you can do to help?

Camp Kaleidoscope 2008

We just returned from Camp Kaleidoscope a family camp for families affected by ASD and we have tons of laundry and loads of memories. This is the second year of Camp K (fondly referred to by campers and staff) and what a difference a year makes in planning.

Last year I helped found Camp K with my friends Peggy Kamens and Jim Mendell and the staff at Common Ground Center in Vermont along with a few other people that shaped a great camp. However, we only had about six months to make Camp K a reality. Which resulted in a fine camp for families and everyone loved that experience.

This year with the addition of Margret Novotny and ALMC (Augmentative, Learning, and Movement Center) we were able to offer graduate speech language pathologist (SLP)the opportunity to receive professional hours in exchange for direct work our with children with ASD at Camp K. How it works is each family gets one or more (depending on how many children in the family are diagnosed on the spectrum) family partners (the graduate student SLP). The family partner helps the family and the child for the entire camp.

In the morning family partners along with many other volunteers usher the children to "Kidsville", a converted horse barn with toys, art, and other indoor activities and a fenced outside playground with a large sand area, climber, swings, and water play.

Parents safely leave their children with their family partners until noon for lunch. While the kids enjoy the activities and just plan old fun, parents get to escape to either hear a lecture about parenting or advocacy or tips in handling tantrums, some people enjoyed painting or tile making, and most parents at some point just went and read a book.

The family partners got a lunch break and community workers helped families with lunch and then family partners were back to help in the afternoon. Our family partner, Erica, played on the climbing structure with our kids and I napped; I was grateful for the quiet time.

Over the four day camp, twenty-two families came from all over the east coast to Camp K in Vermont to connect with other families. Next year we are hoping to add another session since this year we hit our capacity of families and we had 16 families on the waiting list.

To keep the tuition for families reasonable we have done a huge amount of fundraising. Camp K is entering a new phase of fundraising, we need to became sustainable and we are looking for help from the autism community. One way of course to support Camp K is to buy a Parenting Autism workbook and DVD and we donate to Camp K. More on this later.