Sundry notes from a meeting on special needs and the law

1. Parents of special needs children may wish to initiate guardianship proceedings before a child turns 18. These are typically limited and are reviewed yearly by the courts. They can be reversed at any time.
2. Adults over 18 can pay rent to parents to live at home, this can reduce income that may count against social security/disability benefits.
3. A supplemental needs trust can own a home that a special needs adult lives in. (See also: 529 plan problems and special needs).
4. 529 plan problems and special needs (important)
5. Relatives naming a special needs child or adult in a will should name their supplemental needs trust as the beneficiary.
6. Wills should be supplemented by a Letter of Intent that can guide ongoing care and support of a special needs adult or child after the death of their caregiver. This is not a legal document, it is typically a summary of their likes, dislikes, quirks, preferences, etc.
   

A grave problem with 529 plans and special needs children

Many people fund 529 plans to support a child's post-secondary education or training.

Please consult your attorney before acting on anything here, but our understanding is that this is a problem for special needs children.

The trouble is that if a child has 529 assets in their name when they turn 18, the assets over $3000 mean they will not qualify for disability associated medical assistance until the assets are depleted.

Instead some advisors suggest the creation of a supplemental needs trust (not a special needs trust). These can shelter funds for a special needs adult so that disability and medical assistance support is not impacted.

The supplemental needs trust can also fund education. For example, one could purchase tax free municipal bonds in the trust. The fund trustee, usually a parent or family member, can then use the funds to pay for education or training.

Some employers will also allow certain high income employees to defer compensation. It may be possible to then shift the deferred compensation to the fund. This definitely requires attorney review!

If you already have a 529 plan assigned to a special needs child, it can be shifted to another family member before the child turns 18.

To repeat -- you should not act on anything in this post without consulting a very experienced financial consultant or attorney. For example, Wikipedia has conflicting statements on the topic.

Software services for cognitively disabled persons

Sure, this is marketed for "elderly" users. The reality is that it's a solution for cognitively impaired persons, it's just that a lot of them are elderly.

Not all though. This approach is what we need for many young adults and adults with cognitive disabilities ...

Easier E-Mail for the Older Generation - The New Old Age Blog - NYTimes.com

... Mr. Hughes got together with his business partner, Ali Syed, to design an e-mail system that no senior could resist: no logins or links, no ad boxes or news flashes, no pokes or Twitters — only personal e-mail messages and photographs, with a caregiver making sure that everything is running smoothly. 

They named it PawPawMail and created a Web site, pawpawmail.com. Anyone can use the software for $5 a month and run it on any virtually P.C. or Mac, including old clunkers gathering dust in the back of closets.

... What distinguishes PawPawMail from other programs is that it is a managed system aimed at caregivers as well as seniors. “PawPawMail is built entirely around the idea of two users,” Mr. Hughes said in a recent e-mail message. “The senior user who actually uses the e-mail account, and the caretaker/manager who helps set the senior up, gets his or her address book going, and screens mail from unknown sources to prevent contact from all the ridiculous number of scams that are directed at seniors...

This is something I've hoped to see for some time, and that I've often contemplated doing myself. I hope Mr. Hughes business grows well.

Camp Courage Minnesota: Teaching reading to persons with cognitive disorders

I just came across this 2004 post (which I’d written, but forgotten) …

Gordon's Notes: Strategies for teaching reading to the cognitively disabled
… has a web site with lots of additional material...

Strategies for Teaching Reading to Students with Severe Disabilities
... Dr. Koppenhaver notes that, in his research … he and his colleagues found that the cognitive processes of learning to read for students with severe disabilities are almost identical to those of typically developing students. The only difference is in their ability to demonstrate skills through standard assessment measures.…

.. See also the UNC center for literacy and disability studies.

It reminds me to write about literacy programs for persons with cognitive disabilities.
Our son is enrolled this summer at Minnesota’s Courage Camps literacy camp from June 28 to July 3 (2007 description). It’s directed by Koppenhaver and his students …

… This unique session is for struggling readers (all disabilities), ages 12-18, who would like a positive literacy experience. Educators under the direction of Dr. David Koppenhaver and Dr. Karen Erickson, national literacy experts, will be working with campers to determine literacy needs and intervention strategies to begin to address those needs… Campers must be ambulatory and independent with self-care….

David Koppenhaver's web site is: http://faculty.rcoe.appstate.edu/koppenhaverd

Koppenhaver is one busy guy. My wife met with the camp director who’s also a paragon of productivity and energy.

We were concerned the camp would be a bit on the dull side, but the program is pretty appealing for an active teen. We don’t, however, underestimate the challenge of getting our 12 yo to go and stay there.

There really isn’t time for a large amount of reading practice, the core value is the individualized assessment and customized reading development program. The camp also trains local educators, several of whom will teach at Highland Jr High School where my son is going this September. At least one other MN Special Hockey athlete will attend.

Update 6/7/09: We visited the Courage Center Camp in May. It's an amazing facility. I hope to have pictures up and link to them. The camp has a twitter feed and a blogspot blog.

Update 6/26/09: The pictures are on a public Picasa web album.

Update 7/3/09: We're back from camp. The session costs us $800. I think the cost may be adjusted by income, but we're fortunate enough (really) to pay full freight. Our son had a very positive experience. It was his first extended time on his own, and he flew through it, largely taking care of himself. He did much better than we'd expected.

On the other hand, as a reading intervention it wasn't so hot. He tested out much worse than he has at school, which is very depressing. Was he fatigued? Not participating? Or is he truly unable to retain reading skills - or, even worse - are his cognitive abilities deteriorating? I hope it's the first two, but I do fear he rapidly loses reading abilities.

The test results, though tough to hear, are, obviously not a flaw of the program. I was disappointed, however, in how limited the recommendations and prescriptions were. I'm proud of myself for only presenting a glassy smile (ok, maybe a quick grimace) when we were urged to "read lots". (Honest, I didn't scream and I didn't rend my garments.)

We did get a useful referral to the Tar Heel Reader site, and we do know our money went to a good cause, so no regrets. I don't think we'll do it next year though. We need to come up with something different, and I think we'll have to do it ourselves.