Monday, November 14, 2016

To the President-Elect from an Autism Family

Mr. President-Elect:

I don't have to tell you this has been a tumultuous election year.  And I probably don't have to tell you that there are a number of autism families (and people across a number of disability communities) that are concerned about what the next four years will look like for us.  There are a number of reasons why you should care what our community thinks and how we are impacted, but the most obvious reason is the numbers.  One in every 68, Mr. President-Elect, that is how many individuals in our country are diagnosed with autism.  And of course the number of people impacted by autism (the parents, the siblings, the teachers and the professionals) is much, much higher.  The other reason your team needs to recognize and acknowledge the needs of this community: there are some pretty dire needs.  To any leaders who do not think our community is in need of assistance, early intervention, insurance coverage or programs, I implore you: go spend a day in an autism household from sun up to sun down (actually you will probably need to stay a great deal longer than that, because our days never end when the sun goes down and our days always start before the sun comes up).  The experience would be enlightening, to say the least.

Now that I've explained why you should care, here are five ways you can show our community that you do.

1.  Keep and enforce federal education requirements that impact special needs children.

I understand that a number of issues need to be solved at the state level, but as a military family we have lived in three states with our autistic son and let me tell you, the disparity between states is disheartening.  Some states are not even following current IDEA or other federal guidelines and if we strip more federal guidelines from our education system, I fear that disparity will be even worse.  When we lived in Alabama, our son had no access to special needs preschool and because of his challenges due to autism, no private preschools would accept him.  I was told Alabama was breaking the law by not following federal guidelines, but the only way for me to right that wrong was to sue them.  There is very little oversight as to federal guidelines states have to follow regarding special needs and that needs to change.

I understand states' rights, but when states and counties choose to pay their high school football coaches 6 times more than their teachers (no, really), there is cause for concern.  When some states look the other way when children with autism are locked in closets half the day, there needs to be more, not less, done to ensure our public schools all over the country are upholding ethical and effective methods with special needs students.  When our kids cannot tell us what happens at school, we have every right to worry about their education and safety, and we hope you understand why federal regulation matters to us in this regard.  And from a holistic perspective, these things should matter to you too as research has shown that autistic children with access to early intervention and quality early special education have much better likelihood of needing less supports as adults.

2.  Understand why we are fighting for health insurance coverage for life-changing and imperative therapies and fight for it with us.

When our children are first diagnosed with autism we are handed a laundry list of things we MUST do to ensure they have the best chances at the highest quality of life and to become the most productive members of society they can be.  Imagine our surprise when most of these therapies and interventions are not covered by private health insurance.  There have been strides made in this area over the last ten years thanks to the tireless lobbying efforts of Autism Speaks and other organizations to get coverage.  Unfortunately, though, even in some states with now mandated autism therapy coverage, health insurance companies have been able to help shape legislation so they can still legally avoid covering these therapies.

Under the Affordable Care Act, some families have had their first hope of accessing these therapies.  Many families have signed up for much more expensive plans just so they can get this coverage.  While the Affordable Care Act is not perfect and needs some serious changes to stop skyrocketing premiums, please understand that when there is a threat of complete repeal, these families are watching their hope that their autistic children could get help and be successful slip away.

As a military family we have been fortunate to access these therapies when we are stationed at bases in states that have state-mandated coverage.  In states without mandated coverage, there are very few providers and even covered families cannot access care.  While the rest of the insurance industry and the Affordable Care Act are slowly starting to cover more for autism families, our coverage has become more restricted over the last year, with Tricare lowering reimbursement rates for providers and requiring more provider certification than any other insurance company.  This makes military families much less attractive to providers, and many providers (especially in low cost of living areas where rates were hit the hardest) have stopped accepting Tricare patients all together.

As you can see, autism insurance coverage has a long way to go and it matters.  Imagine knowing there were services that would enable your nonverbal child to talk or communicate their wants and needs, to go on public outings that before could not be tolerated, or to be mainstreamed instead of needing special education; imagine knowing those services exist but not being able to access them due to your health insurance plan.  That is the position in which many families in our country find themselves.  And it's heartbreaking.

Just as with the federal education regulation, this isn't just an emotional argument; it's an economical argument.  When we have years of research illustrating what a difference these therapies can make early on and how such therapies give autistic individuals a better chance at being productive members of society, this is clearly something we can all acknowledge is worth the fight and the expense in the long run.

3.  Realize that a huge population of autistic children are aging out of the education system and work with us for autistic adult housing, vocational training and employment placement.

This is an area that needs serious attention.  With a growing population of autistic individuals getting older we need to have a plan in place to ensure their needs are met.  As families, we plan as much as we can, but there is only so much we can do.  And those of us that have saved and put away funds to support our autistic loved ones when we are gone are constantly worried that those funds will keep them from getting disability or placement.  Our son is currently in kindergarten.  At his IEP meeting this year we were handed a pamphlet and told that we need to start getting on adult residential placement lists now if that is a concern because the waitlists are so long and residence centers are so sparse.  Many autism parents and siblings lay awake at night worrying and wondering who will take care of their autistic loved one when they are gone.  We have to have more quality centers, more assisted communities and more programs for adults on the spectrum.  We need to offer incentives and breaks for professionals and investors that can make this happen.

Of course, not all of our autistic loved ones will need adult assisted living arrangements.  But even for those higher functioning individuals their employment rates are incredibly low compared to the national average.  Many in our community want to work and want to contribute to society, but are often not given the chance or opportunity due to their challenges.  Autistic perspectives, work ethic, honesty and talent are an untapped well from which our society needs to start pulling.  We need to start looking at ways to incorporate more autistic individuals into our workforce.  Programs for specific vocational training and placement could start in high school, especially for those not able or not wanting to go into higher education.  Ultimately, such a plan would mean more autistic individuals in the work force and able to provide for themselves.  

4.  Realize that many parents and caregivers of autistic individuals are caregivers 24/7 and cannot work, run errands or rest.  Work with us to find respite and caregiver financial relief solutions.

I know a lot (and I mean A LOT) of autism families with severely autistic children.  Unfortunately, I know very few who have access to or know how to get respite services in their county/state.  Most of the families I know have one parent who stays home, not by choice, but by necessity.  I know families whose children are too severe to be accepted to daycare or for an in home sitter to be qualified to take care of them at a cost that would not break the bank.  Not only can one parent not work, but while many families with chronically ill children qualify for in home nurse care, because our children have a neurological condition that is not an option for us.  There are respite services through some states and some programs, but there is so much red tape and waitlists are so long that very few people know how to access those programs.  We see study after study showing the mental and physical health strain on parents of autistic children, yet there are few options available for us to have any time to take care of ourselves so that we can best take care of our children.

We need to look at more ways the national government can help states help us.  That may be as simple as streamlining the respite application process or in some states it may mean starting a medicaid waiver program so that families of all economic standings can qualify for much needed respite care.  After living in three different states with an autistic child, I can attest that some states will need a nudge to make this a reality for all autism families.

Many of us are saving the government a great deal of money by continuing to care for our disabled children after they age out of the system and not signing over guardianship to the state.  For those of us that choose to take care of our kids well into their adulthood, it should be easier for us to get funds to be our son/daughter's caregiver rather than being forced to put them in a home.  For those who have a severely autistic child and are single parent families, they have to have more options for funding as a caregiver, especially when they try over and over again and do not qualify for disability.  

5. Help us find national solutions for autism wanderings and police relations with autistic populations within our communities.

One of the hardest statistics to swallow as an autism parent are the number of accidental deaths due to wandering.  Many autistic children and adults have no awareness of danger.  Many also have a tendency to bolt or wander.  We as parents do as much as we can to keep our kids safe.  We have special locks, some of us use harnesses, we are hyper-vigilant in public settings and we are very specific about who can watch our children.  Even with all of that, accidents still happen and we cannot plan or prevent every situation, especially as our children get older, bigger, and are sometimes in the care of a school district.  When autistic individuals do get away from their caretakers many of them cannot communicate their name or address, or understand if someone is trying to help them or hurt them.  Around half of all autistic children exhibit wandering behaviors.  And the outcome can be fatal, especially if the child goes near water.  Over 90% of autism wandering deaths last year were due to drowning.

Unfortunately, officials will not issue an Amber Alert for an autistic child gone missing if they have not been kidnapped.  Families have primarily relied on social media and local media to try to get the word out that their child, teen or adult on the spectrum is missing.  Some communities have started their own local alert systems, but with the number of autistic children that go missing daily we need a national alert system for the autism community.

Some local police departments have received grants to distribute trackers, but getting one for your child, like everything for special needs families, is very difficult.  In most cases, your child has to have already gone missing at least once in the past to qualify for one.  But, if we look at the amount of money spent on recovery efforts when autistic individuals go missing (the police, the helicopters, the dive teams, etc), a GPS tracker for every autistic child with wandering tendencies would be less expensive in the long run.

Another safety issue for our community that has recently garnered national attention: encounters with police officers.  Autistic individuals are seven times more likely to have encounters with police than their typical peers.  These encounters are often nerve-wracking or even terrifying for people on the spectrum.  They cannot always verbally express themselves or understand commands.  A sensory meltdown, can also look like a rage and be misinterpreted, especially if the autistic individual is older and bigger.  And because people with autism do not always have the awareness to realize the gravity of the situation, things can be miscommunicated and turn tragic very quickly.

Many police officers have not been around autism enough to have a real understanding of how to handle encounters with people on the spectrum.  These two communities need to be able to trust each other.  More training is needed for police officers when it comes to mental health and neurological disabilities, but we cannot stop there.  I would love to see communities across the country have autism awareness events at which police officers could be exposed to autistic individuals and autistic individuals could be exposed to and try to get more comfortable around police officers.

Notice What Is Missing From This List  

Millions of dollars have been spent on trying to find a cure for autism.  Millions more have been spent trying to prove a link between vaccines and autism.  As an autism mom, I beg you to look at all of the most current (peer-reviewed) research data on these topics and listen to the current professionals in the field.

More than 3.5 million Americans fall somewhere on the autism spectrum and if we can shift the focus and more funding from cure and cause to support and care the future for this community and all of America will be that much brighter.

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