529A (Able tax-free savings accounts) slowly state-by-state rollout starts 2016.

Able accounts are coming, slowly starting next year. On my quick review the fund looks like a good way to pay for housing.

The Arc has a useful fact sheet, but it predates authorization and treasury rules are only up for public hearing in October 2015. I think some of this is now incorrect:

• At $100,000 SSI benefits are suspended and restarts if falls under 100K, but medicaid benefits continue. When individual dies balance goes to medicaid.
• residents of one state can open accounts in another state, so you don’t need to wait for your state to create an account. (But NYT article below suggests we have to wait? Confusing)
• beneficiaries can rollover from an ABLE to a 529 if no longer disabled including another family member’s ABLE or 529 (Doesn’t say whether one can go the other direction, from a 529 to an ABLE). Rollovers can also go to a special needs trust. (q: So if the 100K limit nears can one rollover to the trust? What about other direction? 
• The fund can be used to pay housing (this is the big one), transportation (bicycle?), health related (gym?), disability care expenses (legal fees, oversight, etc).

The http://www.ablenrc.org domain is supposed to go live in September 2015 with more information. There is a $14K limit to fund per year.

The NYT has a more current review of 529A accounts, emphases mine. It’s unclear whether the 100K limit will be a balance limit or a lifetime contribution limit and whether that will vary by state. If it’s a lifetime contribution limit that’s not so good. It’s also unclear what happens if someone changes residences.

Tax-Free Savings Accounts for Disabled Are Expected in 2016 - NYTimes.com

… each must approve its own legislation to set up a plan. As of Aug. 13, 40 states and the District of Columbia either had passed laws or had proposals pending, but 10 states had no bill pending, according to an online registry maintained by the Arc, an advocacy group for people with intellectual and developmental disabilities.

The Treasury, meanwhile, has proposed rules to govern the accounts, and will hold a public hearing on them in October.

As with 529 college savings plans, 529A accounts allow contributed funds to grow tax-free, and to be withdrawn tax-free for eligible expenses. Anyone — including family and friends of a disabled person, as well as the disabled person — can contribute to the accounts, but there is no federal tax deduction for the contribution.

An important feature of the accounts is that they allow people with special needs to save for their care and education without disqualifying them from receiving government benefits….

… Typically, families must set up a special-needs trust to set aside funds for a disabled child without putting benefits at risk — a step that can involve costly legal fees to establish and maintain the trust. Funds in the Able accounts, however, won’t count toward that limit, so they may provide a simpler, lower-cost alternative for many families.

The accounts, however, have some limitations. To qualify, you must have been disabled before age 26. The funds have an annual contribution limit equal to the annual gift tax exclusion — currently $14,000. The account can grow to $100,000 without jeopardizing federal benefits (although some states may set much higher overall total contribution limits), but balances over that amount may prompt a suspension.

…  families may want use a combination of a 529A and a special-needs trust, depending on their financial situation, said Christopher Krell, a financial adviser and principal with Cassaday & Company. With special-needs trusts, there is no contribution limit and they can be structured to avoid Medicaid repayment. “The 529A accounts are great,” Mr. Krell said, “but they’re not going to get rid of special needs trusts.”

■ Can an individual have more than one 529A account?

No. Unlike 529 college savings accounts, you can have just one 529A account, and it must be established in the state where you live (or through the program your state contracts with).

■ How can I find out when 529A accounts will be offered in my state?

You can check with the agency that administers your state’s 529 college savings plan for updates. In early September, look for an online 529A resource center at www.ablenrc.org.

The state-by-state rules sound like a mess; I wonder if that was a GOP congress outcome. If the plans end up restricting an individual ability to move between states I wonder if there will be a constitutional challenge.

My gut sense is that we’re going to get a lot less than what we’d hoped for, but maybe things will improve over time. The special needs trusts remain very important. The real impact could be on paying for housing — that’s increasingly important given the seeming collapse of programs designed to provide housing for disabled adults.

Free online training program for Minnesota special needs workers

The Arc of Minnesota and the University of Minnesota are making Elsevier Publishing’s online training programs available free of charge to Minnesota residents; the list price for one of these courses is about $300. They are designed to support training special needs professionals.

There are four training programs, each with a university sponsor:

Direct Support (University of Minnesota): designed for direct support professionals (DSPs) and others who support individuals with disabilities.

Employment services (UMass): "designed for professionals who support people with disabilities and other challenges to find employment"

Personal Assistance (UCSF): “personal care assistants, home care providers, and family caregivers"

Recovery and Community Inclusion (Temple): "community mental health practitioners”. I assume this is primarily aimed at persons with substance use disorders, but it may include persons with schizophrenia.

The programs use old technologies such as Flash, Windows Media Player, and QuickTime. They won’t run on iOS devices.

The employment services curriculum is probably of most interest to us, if only to learn the “party line” and jargon. Topics include:

• Evolution of Employment Services
• The Employment-Services Professional
• The Role of the Job Coach Outside the Workplace
• The First Days of Work and the Employment Support Plan
• Legal Rights at Work and Self-Advocacy
• Preparing for Emergencies in the Workplace
• Developing a Task Analysis
• Natural Supports, Self-Maintenance, and Fading
• Why Work? An Overview of Work Incentives
• Proactive Planning: Staying on Track with Work Incentives
• Key Incentives for People Receiving Social Security
• Disability Insurance
• Key Incentives for People Receiving Supplemental Security Income
• There’s More to Benefits: Health Care and Other Subsidies
• The PASS: Helping People with Disability Benefits Create Careers
• Where Funding Comes From
• Social Security and Additional Funding Sources
• Social Security Ticket to Work program
• Self-Employment

Minnesota residents can request a new learner’s account. Other states may have similar programs, check with your local The Arc office.

 

PS. The signup process asks users to include the last four digits of a SSN as part of the user id. I think I know why they are doing this, but it’s a singularly bad idea. My last name is unique enough I simply appended the last four digits of my phone number.

US to fund less than one staff person per state to support special education information

Early in our 13 years of experience with special education we were surprised that our new country was unmapped. Surely someone had a map somewhere!

But they didn’t. Nobody has a map. There are Federal mandates, like IEP plans, that are common everywhere, but each state has its own details. Parents rely on organizations, like the Autism Society and Pacer, to fill the gaps. Parents with the ability to join volunteer at school or join volunteer organizations hear of essential programs by word of mouth. Relatively wealthy parents hire specialist lawyers to get the inside scoop.

Why isn’t there a map? I suspect it’s an emergent form of rationing. The demand for special education services far exceeds the supply; good maps would lead to a more conspicuous rationing mechanism (or lawsuits). I think this is true of many services, it’s not unique to special education.

Today there was an announcement of a DOE effort to improve the situation...

Special Education Training Efforts To Get Millions - Disability Scoop

… The U.S. Department of Education said it will grant $14 million to support parent training and information centers in 28 states and two U.S. territories over the next five years. The centers, which are located in each state, are designed to offer parents assistance with everything from understanding special education law and policy to interpreting results from evaluations….

I wonder why only 28 states. In any case, this comes to roughly $100,000 for each of the states and territories per year. After overhead I think that will fund a staff position, though that position will be lost when the grants run out. It’s not going to make a major change — the terrain remains unmapped. 

Magical thinking

Many people have superstitions of one kind or another. Our #1 has more than a few, and they contribute to his disabilities. For example, he bicycles miles out of his way to take certain favored routes for no reason he can describe.

He’s had these problems all his life. The only thing I can compare them too is a beloved dog of ours who developed an intractable aversion to the back yard of a new home. Nothing, absolutely nothing, would persuade her to put her paws on the unfrozen ground there. We have no idea where this came from, but it never wavered over the last seven years of her life.

It may be some dysfunctional associative learning — perhaps something unpleasant happened to #1 once and he forever associates it with a similar smell or shape or form. The rest of us can form these associations and dispense with them, but that process doesn’t work for him. This learning/memory dysfunction probably overlaps with some of the problematic compulsions we work on.

Sometimes we can find a workaround for the most troublesome aversions. One of these is a powerful aversion to any kind of bicycle adornment — including a saddle, frame, handlebar bag, a rack, or a lock. He’ll use the pockets of his bike shirt but that’s it. After some failed behavior change efforts we realized this fell into his “magical thinking” domain — reasoning is futile.

This is a safety problem because he rides his bicycle around and even beyond the metro area — thanks to our superb segregated bicycle paths.  Mobile phone technologies including Apple’s “Find Friends” mitigate some of the risk, but what if his phone fails? We need him to carry identification, emergency numbers, a multi-tool, a baggie to protect his iPhone in case of rain, coins for a rare payphone if one can ever be found and, ideally, auxiliary power for this phone. He’s not willing to put everything we want him to carry in his bike shirt.

We found a fix. He’s willing to carry these things in a bicycle bottle shaped container that’s stored in a typical frame mount bottle carrier. We put them in once and they stay there. One magical thinking problem solved.

There are a lot more of course. A direct assault rarely works. It’s all about finding these kinds of indirect solutions. We can’t always come up with them...