Sunday, May 11, 2008

Reprise: Why Families with Autism Need to Celebrate Mothers Often

Last year for Mother's Day, I posted this piece on Autism Bulletin: Why Families with an Autistic Child Need to Celebrate Mother's Day Frequently; Plus Some Suggestions. Click on the link to read the piece.

In short, parents, and especially moms, work long and hard to help their kids. It's important to take time off, away from this demanding life, so you can rest, recharge and get back to it. Respite helps you help your children.

Some respondents to this piece explained, understandably, that getting time away from the family can be difficult to arrange. An unscientific survey on this blog showed that most parents took no time off at all.

When was the last time you took a break, for at least an hour? And what did you do? Walks count. So do coffee shop meetings.

Please feel encouraged to share your thoughts.

Saturday, May 10, 2008

Caring for Siblings of People with Autism

A young man wrote to Autism Bulletin recently to express his frustration about his adult sister's life. The details I will keep private, but the gist is that he feels that his sister, though employed, is capable of much more than the duties of her entry-level job. In addition, he is frustrated that she continues to demonstrate a narrow set of interests in her life.

A few things struck me about this note, and I want to share them with you and then ask for your comments and advice for siblings.

1.) Parents need to pay attention to the emotions and needs of siblings of our kids who have an autism spectrum disorder.

Of course we don't forget about our typically developing, or developed, children as we spend so much energy on our children with autism. It's a good idea, though, to add to our long to-do list: look for ways to meet siblings' emotional needs.

There are support groups for siblings available in many areas. Sometimes those groups are designed specifically for siblings of people with autism spectrum disorders, and sometimes they are for siblings of people with various disabilities.

You may find it useful to do other things, like special outings, activities geared specifically to the sibling's interests and passions. The key is to set aside time for this.

2.) The sibling's needs don't stop after childhood.

As this young man noted, he is thinking a lot about his adult sister. He consults with his parents, but he has his own ideas, wishes for his sister and frustrations.

3.) There is something good going on here.

This young man was very frustrated and took the time to write to me about it. When I wrote back to this young man, I started off by telling him that his sister is a very lucky person to have a brother who cares so much about her.

That good fortune is a blessing, really, for all of us. It shows that people who grow up in a home where the family is a group of caring people can make a difference. I know that my outlook on life, on the world, on people has changed since my family began learning about autism. I can only hope that we find more people with the capacity for compassion and understanding as we continue along. In that sense, this young man's e-mail to me made my week.

Also see:

Ideas for Finding a Sibling Support Group

More Info: Support Groups for Siblings of Kids with Autism

More on siblings on Autism Bulletin

Saturday, May 03, 2008

How to Find Autism Health Insurance Information

In the United States, insurance coverage for autism services such as Applied Behavior Analysis (ABA), speech therapy and other services, varies by state. A number of Autism Bulletin readers have written recently asking how to find information about health insurance coverage in their area. Here are some tips:

1.) Get in touch with autism advocacy groups in your state.

There are power in numbers when advocating for public policy changes, and advocacy groups such as the Autism Society of America and Autism Speaks have chapters in many areas around the nation. Even if the chapter in your state or metropolitan area doesn't have any one working on this issue, you can ask them if they know someone who is.

There is an active national network of advocates working on this issue and it pays to tap into their experience. For example, a group in Arizona has been advocating for autism insurance coverage and worked with Autism Speaks to create a document listing the reasons it makes sense, both economically and from a public policy perspective.

These groups can also help you understand what the state law is right now in your state. Some states, such as South Carolina and Texas, have passed laws that require health insurance plans to provide some coverage for autism services. You can read about a number of these states by looking at the Autism Bulletin archives on health insurance issues, or using the search box.

2.) Check with your health insurance provider about specific policies and terms that apply to your family's claims.

You should understand what coverage you have now, and what limits there may be for that coverage. For example, some health maintenance organizations may limit the number of occupational therapy visits a patient is allowed to claim; once you reach that limit, payments for every visit after that could need to come out of your pocket.

Side note: while you are waiting for policies to change, you can check to see if your employer offers an arrangement called a medical flexible spending plan. This is a federal tax policy which allows you to set aside money from your paycheck, up to $5,000 per year, for medical expenses. You can use this "pre-tax" money to pay for autism services. The effect is to stretch some of your dollars to pay for these services. The Internal Revenue Service has an information page here. And make sure to review with your tax adviser what using this money means for your income tax returns.

3.) Call your state representative and ask what's going on.

Armed with information from advocates and your health insurance policy, get in touch with your state representative or state senator to let them know you are interested in what's going on with insurance coverage for autism.

Understand that a number of states have set up special commissions to study the issue of autism spectrum disorders, as a first step to figuring out what to do. So you can ask if your state has done one of these studies, and where to find a copy.

Some states have legislators who have personal experience with autism spectrum disorders. Every state should have lawmakers who care about healthcare, special education, and/or people with disabilities. So if you find no help at your state representative's office, figure out who may give you a more sympathetic hearing. Just be aware that insurance companies and people who disagree with you are doing the same thing.

Project Vote Smart has a very helpful website that helps you find your elected representatives by your Zip Code.

4.) Be an engaged citizen and participate in our democracy.

All of these steps involve paying attention and being willing to get involved in a political discussion. It's easy to feel like there's not much any one family, any one parent can do, to help move the global or national needle on autism services. But as the saying goes, many hands make a big load lighter.

So read the news. Ask questions. Find others who care about this issue and talk about it with them. And see what happens.

Observers of this issue also will note that while representatives of the insurance and business lobbies have lined up to oppose more insurance coverage for those with autism in states like Pennsylvania and Texas, this is not a partisan issue. All you have to do is read about South Carolina, where a Republican lawmakers overrode the governor's veto in 2007 to pass autism insurance legislation. And who led the charge, to get them to do that?

Three families, led by three moms.