Adding Up the Costs of Disability: The Need to Plan

Taxes, trusts, and treatments -- oh my. If you're reading this blog, I probably don't need to tell you it's expensive to care for someone with a disability. In a recent discussion with Disability Scoop, the co-founder of the Academy of Special Needs Planners gave tips on planning for the future -- touching on issues from government benefits to taxes to long-term planning.

If you have a loved one with a disability, this is important information explained in a clear way. If you're not personally affected, I still encourage you to read this so you understand the hoops families have to jump through because of complicated and often illogical government regulations. Read the interview.

Palin Speech Fails to Impress

Fact checking Gov. Palin's speech on special needs, Igor Valsy at the Wonk Room says, "Palin is a confident and compelling spokesperson for special needs children. But what the campaign gains in charisma, it loses in credibility." For example, she talked about "reprioritizing" spending in order to fully fund the Individuals with Disabilities Education Act (IDEA) -- ignoring the fact (or not knowing) that achieving that goal by redistributing the budget would require a 6.4 percent cut in ALL OTHER DOMESTIC PROGRAMS. That means Pell grants, Section 8 housing, low-income energy assistance, WIC, clean energy research, and "dozens and dozens of other programs." Not to mention the fact that McCain has opposed funding IDEA numerous times.

How did the speech go over with people who know about disability firsthand? Becky Blitch, who I've quoted here before and who lives with spinal muscular atrophy type II, says she was infuriated by Gov. Palin's speech. "By going off on impassioned tangents about earmarks and Obama's tax plan, Gov. Palin gave the impression that this speech was merely cover for stump-speech attacks, belittling the importance of the topic at hand....It's worth noting that absolutely no new territory regarding disability policy was covered in this speech....Let's face it: John McCain and Sarah Palin are losing this election. The governor could have used this moment to 'pull a Bullworth' and make some bold statements about where this country really needs to go in terms of disability policy. She didn't. She stuck to a couple politically safe proposals, she attacked Barack Obama, and she got misty-eyed over the special-ness of special needs kids. That, my friends, is called pandering. Nothing new about it."

In a post titled "The Fantasy of Palin's Plan for Special Needs Children," blogger "Writes Like She Talks" says Palin "either has no idea what she is talking about or is purposely presenting false impressions about what the federal government currently does for special needs kids, who is responsible for taking care of special needs kids, and what impact she, as VP, could possibly have on any of that....Either way, or both ways, nothing that she suggests as a promise for what she would do or be able to accomplish as VP is, in reality, achievable."

Over at Daily Kos, "Critical Dune" writes: "As a special needs parent and advocate, it's killing me to hear this garbage because she is fooling some of the people some of the time with this pander." His post includes a good link to a Wall Street Journal summary of what a special needs trust is.

Do Lies + Fear = Votes? Special Needs Trusts and Taxes

Sen. McCain and Gov. Palin today started a new misleading attack against Sen. Obama -- that his tax plan would somehow harm "special needs trusts," which are long-term savings accounts for people with disabilities. Let's check the facts:

- Obama's plan will not raise taxes on any family earning less than $250,000 per year.

- A special needs trust earns interest, just like a savings account does. So if a person had a special needs trust of $5 million, that account could produce annual income of $250,000 and may in fact lead to higher taxes under Obama's plan. Do you have a family member with special needs who has $5 million in a special needs trust? If not, the Obama tax plan would have no impact on that account.

- What economic impact will the McCain-Palin plan have on children and adults with disabilities? To answer that question, consider the impact of freezing, reducing, or eliminating every federally supported benefit they currently receive -- Social Security, housing, education, and other support. Consider the impact of a health plan that does not require providers to cover pre-existing conditions like autism and Down Syndrome. Some analysts have predicted that as many as 20 million Americans could LOSE their existing health coverage under the McCain-Palin plan.

You will be hearing more McCain-Palin lies over the next 11 days -- their campaign has officially announced a new strategy to try to win votes by scaring parents with special needs kids. Are you more likely to vote for presidential candidates who turn away from visions and plans in order to try to scare you into voting for them? Apparently they think families dealing with special needs are so (a) stupid or (b) vulnerable they can be manipulated into believing outright lies.

Palin Seems to Have No Idea What IDEA Is -- And That's a Problem

I recently had an insightful conversation with Jennifer Laviano, an attorney in Connecticut who has devoted her career to representing children with disabilities. A note she wrote to her clients, friends, and colleagues has started making the rounds on the Internet, and I wanted to confirm the letter was really from her -- and to ask if I could post it more widely.

Jennifer initially intended to keep her political views to herself. She didn't want to offend anyone who may support McCain-Palin, but so many of her clients were asking her opinion that she wanted to provide some information. She decided to write the letter when Gov. Palin demonstrated a complete lack of knowledge about the Individuals with Disabilities Education Act (IDEA), the federal statute that governs special education. Here are some of her main points. I encourage you to read the entire letter.

"The IDEA is up for reauthorization by Congress in 2010, and it is crucial that it reflect the policies and funding structure necessary to protect and appropriately educate our children with disabilities. I needed to know what Gov. Palin thinks about the future of special education legislation in this country.

"I know where the other three on the tickets stand; Senators Obama and Biden have issued position statements on the IDEA to various parent groups, strongly supporting full funding for the IDEA and the rights of children with disabilities and their parents....Neither McCain nor Palin have provided those positions on the IDEA to parent advocacy groups....I was extremely disappointed in McCain's discussion on the Senate floor regarding the reauthorization of the IDEA 2004, in which he expressed his concerns that parents of children with disabilities who have to sue to secure appropriate services for their children under the statute and win against districts shouldn’t have their attorneys’ fees covered. This is not just a matter of self-interest for me -- it is the difference between families, especially poor families, being able to vindicate their civil rights or not. But I knew those things -- I did not know where Palin stood, and I wanted to find out.

"Having waited for some specifics from her on just how she is going to be an advocate for children with special needs in the White House, I finally got close. In her recent interview with Greta Van Susteren on Fox News, she was asked what her position is. While never mentioning the IDEA at all or what needs to be changed, kept, or fixed in it, she stated that the issue that needs to be addressed is 'equal access' for children with special needs. EQUAL ACCESS? Seriously? We HAVE equal access, that is what the original version of the statute fought for in the early '70s, when children with disabilities were literally prohibited from attending our public schools....Our problems are not that children with disabilities aren’t allowed into the buildings; our problem is what happens when they get there! ... We are decades from equal access being the key question, and apparently Gov. Palin is not aware of that fact.

"It is not terribly surprising to me that Gov. Palin’s views on this are so far outdated. I have traveled to Alaska to give a speech to parents and professionals on the subject of the rights of children with special needs, in particular children with autism spectrum disorders. I was stunned by how far behind the state was from the vast majority of the rest of the country on the education of children with disabilities....

"This issue should be front and center for any candidate for the White House, and I write to let you know that, at least as far as Gov. Palin is concerned, it has been an opportunity not only missed, but frighteningly misunderstood. It does not bode well for her, for us, or most importantly, for the children we love who need and deserve better in an 'advocate in the White House.'"