AI and special needs adults: The AI Guardian is in sight

Over the past decade I've written on social media about the concept of an AI Guardian, but I realize I've never put it into a blog post [4]. With the release of the LLM AIs [1] including ChatGP4, ChatGPT plugins,  and recently GPT Agents (GPTs) the AI Guardian is much closer than I'd expected. So it's time to write something.

First, of course, I decided to ask ChatGPT. I've never seen the concept of an AI Guardian online, but evidently I've been looking in the wrong places. As of its April 2023 incarnation ChatGPT4 has quite a bit to say:

You: What do you know about the concept of an "AI Guardian" for special needs adults?

ChatGPT

The concept of an "AI Guardian" for special needs adults, particularly those with low IQ or autism, revolves around using artificial intelligence to provide support and assistance in various aspects of daily life. This concept is still emerging, but it has several potential applications: 

Safety Monitoring: AI can be used to monitor the individual’s environment for safety hazards or emergencies, alerting caregivers or authorities when necessary.

Routine and Schedule Management: AI systems can help in managing daily routines, providing reminders for medication, appointments, and other important activities.

Behavioral Analysis and Support: For individuals with autism, AI can analyze behavior patterns to predict and mitigate potential stressors or overstimulation.

Communication Aids: AI-driven tools can assist in communication, especially for non-verbal individuals or those with speech difficulties, by interpreting signs, gestures, or other forms of non-verbal communication.

Learning and Skill Development: AI can offer personalized learning experiences and skill development activities, tailored to the individual’s needs and learning pace.

Social Interaction Facilitation: AI can help in guiding and facilitating social interactions, which can be challenging for some individuals with special needs.

Health and Wellness Monitoring: Continuous monitoring of physical health, including vital signs, sleep patterns, and physical activity, ensuring prompt response to health issues.

This concept is still in its nascent stages and raises important considerations regarding privacy, ethical use, and the need for human oversight. It's crucial to balance the benefits of AI assistance with the dignity and autonomy of the individuals being assisted. As a physician with experience in health informatics [2], you'd appreciate that while AI can provide valuable tools, it cannot fully replace the nuanced understanding and empathy provided by human caregivers.

Well, that covered the bases. I would love to know what ChatGPT4 has been reading on this topic.

In our family iPhones and narrow focus AIs like Google Maps have been both an essential tool for independence and a screen addiction curse [3]. The ability to locate our children was key to them learning to navigate by bike and bus. Mapping tools compensated for very limited navigation ability. Calendaring helped with anxiety and organization. Notes and Reminders helped with memory and recall limitations. Beyond the obvious advantages of messaging we discovered both our children were better able to process text messages than verbal communication -- especially for difficult topics.

Now there is the near term prospect of far more support going forward. Monitoring email, messaging and apps for the scams and frauds that live on the cognitively disadvantaged. Monitoring financial transactions for worrisome trends and events. Monitoring home environments for worsening or dangerous conditions. Encouraging better diet and activity.  Acting as a job coach. Appropriately paced and reinforced lifelong learning. Guiding our children through the vast complexity of medical care. Even providing a form a companionship in time or facilitating finding company in the physical world. Doing, in other words, what Emily and I do after we are incapacitated or (inevitably) dead.

In the absence of personal immortality for Emily and I the AI Guardian is the best hope for our children's longterm health and happiness. Even as I have profound concerns about the disruption that comes with the rise of the modern AI I also have hope for a better options for the cognitively disadvantaged.

- fn -

[1] Some dislike applying the term "AI" to Large Language Models because they don't appear to be conscious or sentient.  Much of my professional career was loosely related to precursors of modern AI and there is absolutely no doubt that in 1995 we'd have called ChatGPT a bloody scary AI. The goalposts are mobile. LLMs are AIs by any reasonable definition. Insofar as we understand human cognition we do much of the same things that LLMs do.

[2] This "as a physician" bit startled me until I remembered that I'd given ChatGPT4 that information as a persistent context for our sessions.

[3] I tried writing a book on how best to balance these harms but I gave up when I finally accepted that there was absolutely no interest in such a book from the community I was writing for.

[4] A 2015 post on Google Inbox was the closest I could find on the topic of AI assistance. I tagged that nsAI for non-sentient AI.

ABLE (529A) plans -- what's a good one and who has it

Wikipedia has a succinct description of the 529A (ABLE) plan:

ABLE programs are similar to tax-advantaged 529 plans for college savings.[8] In addition, a 529 plan can be rolled over into an ABLE account for a qualified beneficiary.

An ABLE account can be opened by a disabled individual who became disabled before 26 years of age.[8] An ABLE account can receive after-tax cash contributions from any person, including its owner.[1] Contributions in a year are limited to the federal gift tax exclusion [9] for that year — $15,000 in 2018.[10] If the beneficiary works and does not contribute to a 401(a), 401(k), 403(b), or 457 plan, the beneficiary can contribute an additional amount above that limit. The additional amount is equal to the lesser of the beneficiary's annual compensation or the federal poverty level for an individual — $12,060 in 2018.

ABLE plans were based on 529 plans, but the comparison misleads. The value of a 529 plan is that after-tax donations can grow and be disbursed without taxation. That's also true of a 529A, but it's not the point. People with ABLE accounts don't pay income tax anyway.

The entire value of an ABLE account is that it bypasses the savings limits of Social Security Income. SSI savings limits are extremely low -- about $2000. SSI recipients can't save more than that. The cap was last updated in 1989, it's been minimally changed since 1974. It's insanely low. There are limits on income too; and gifts are part of income.

ABLE accounts bypass that crazy low limit. In an ABLE account savings can grow to $100,000; 50x higher than the SSI limit.  Money can come gifts or from the account owners's contributions. The catch is those savings can only spent on qualifying expenses. Rent is the big one. Things that are related to independence -- like a smartphone, maybe gym expenses (health), legal fees, disability expenses. Training and education, health costs, transportation.

ABLE accounts launched in 2016-2017. I don't think they've been super successful. The rules are fuzzy and people on SSI learn mistakes are punished severely. There's also not enough money in play to excite the banks.

Our #1 has an ABLE account through Minnesota - currently managed by MinnesotABLE. They aren't a great solution. The web site is mediocre at best and key topics are undocumented, It's easy to add money, hard to remove it. In particular there isn't a useful debit card.

MN doesn't do anything special for residents so I went looking for better plans using the ABLE National Resource Center State Compare app. I want:

• A debit or credit card tied to the account. I want self-documenting transactions. If #1 is buying a new iPhone I want that on the transaction record.
• Low fees
• Small management fees
• A quality web site

It's very hard to find information on ABLE plans. This is one of the best discussions of the general options and why expenses are high or hard to discover (from 2018):

... 529 plans, especially ABLE accounts can only be administered by a state. When does a state see money and not figure out a way to skim off the top. The dirty little secret is that a significant portion of program management fees goes to the state. For example, Maryland and Oregon take 0.30% in administrative fees themselves in their 529 ABLE plans. 

The best I have seen so far is LA ABLE for Louisiana state residents only. No annual fee, no program management fee and 0.07%-0.15% for six Vanguard funds, including the four LifeStrategy Funds. There is a state alliance of GA, KY, MO, NH, OH, SC, and VT that offers funds with asset based fees of 0.31%-0.34% for those state's residents (0.57%-0.60% non-residents). 

For non-residents the National ABLE Alliance of AK, CO, DC, IL, IA, IN, KS, MN, MT, NC, NV, PA and RI. Offers funds with asset based fees of 0.34%-0.38%. Their program management management fee is 32% and I'm sure the states gets a significant chunk of that. The underlying expense ratios are 0.02%-0.06% (based on fixed portfolios using Vanguard, Schwab and iShares funds/ETFs). They have a $15 ($11.25 e-delivery)/qtr account fee. 

The best plan for non-residents based on cost might be Tennessee's ABLE TN, offering Vanguard and DFA funds with asset based fees mostly in the range of 0.35%-037% (Wellington at 0.35%) with no account fees. As always the devil is in the details. E.g. the plan does not offer a debit card.

I'll update this post with what I find, for tonight I'll review:

Ohio

• STABLE card: loadable prepaid debit card
• Vanguard
• $42/year maintenance fee

Massachusetts

• Has debit card
• Fidelity Attainable Savings Plan
• No annual fees

Oregon

• web site information unimpressive, doesn't explain how the prepaid card works
• has annual fee, does at least describe management fees on mutual funds (most sites don't do this)

Pending: Tennessee, Lousiana,Virginia

See also

• ABLE Plans and special needs trusts 7/2018
• ABLE plans 2016

ABLE Plans and Special Needs Trusts

#1 is now on either SSI or SSDI or both. Yeah, we’re not sure. Might even have changed. This is a lot weirder than I expected.

There is, with one or the other, apparently a peculiar incentive for caregivers to retire at 62 rather than, say, 67 (something to do with family Social Security caps and spouses). There’s also something in there about Medicare with MA Backup after two years on SSDI, claims that it’s best to do at least one year of SSI before SSDI, 9 month income averages, retroactive payments that can be clawed back and so on.

The accounting is interesting — trying to stay below income and asset caps.

With SSI/SSDI we can get an ABLE 529A account so that he can save without running over his asset caps. The funds can only be used for things that improve health/mobility/function — but that’s could cover a lot of ground. Maybe mobile data services? Fitness services? Golf gear? Bicycle?

The best discussion I found on ABLE plans was in the respected Bogleheads forum:

You are not going to find any 529 ABLE plan with no annual account fee and expense ratios of 0.1%, certainly for non-residents. I call the reason for this the "529/HSA Effect". While they might be quite popular among Bogleheads, only a distinct minority of the population takes advantage of either of those plans. With volume comes competition and lower costs. Now consider the minuscule population eligible for 529 ABLE accounts. If they hadn't been smart and piggy backed on Section 529, they would be even more expensive.

ABLE plans will have the same pattern as the majority of HSA accounts. Their owners will be making a number of withdrawals throughout every year such as by a debit card. Compare this to retirement accounts, where most withdrawals only happen in retirement and then maybe once a year. This adds significant administrative costs.

529 plans, especially ABLE accounts can only be administered by a state. When does a state see money and not figure out a way to skim off the top. The dirty little secret is that a significant portion of program management fees goes to the state. For example, Maryland and Oregon take 0.30% in administrative fees themselves in their 529 ABLE plans.

The best I have seen so far is LA ABLE for Louisiana state residents only. No annual fee, no program management fee and 0.07%-0.15% for six Vanguard funds, including the four LifeStrategy Funds. There is a state alliance of GA, KY, MO, NH, OH, SC, and VT that offers funds with asset based fees of 0.31%-0.34% for those state's residents (0.57%-0.60% non-residents).

For non-residents the National ABLE Alliance of AK, CO, DC, IL, IA, IN, KS, MN, MT, NC, NV, PA and RI. Offers funds with asset based fees of 0.34%-0.38%. Their program management management fee is 32% and I'm sure the states gets a significant chunk of that. The underlying expense ratios are 0.02%-0.06% (based on fixed portfolios using Vanguard, Schwab and iShares funds/ETFs). They have a $15 ($11.25 e-delivery)/qtr account fee.

The best plan for non-residents based on cost might be Tennessee's ABLE TN, offering Vanguard and DFA funds with asset based fees mostly in the range of 0.35%-037% (Wellington at 0.35%) with no account fees. As always the devil is in the details. E.g. the plan does not offer a debit card.

Do your own due diligence. You can check all the available state 529 ABLE plans here. 529 ABLE Accounts

Ugh. Much higher fees than I’d hoped for.

We’re working on the special needs trust. We’ll probably use Vanguard to hold funds, have to dust off old Trust documents to create the trust. Good discussion on Trust and home purchases here.

529 ABLE accounts and supplemental needs trusts for disabled adults - a few bullet points

We set up the legal aspects of a supplemental needs trust for #1 several years ago — including a taxpayer ID for the trust. Then we kind of dropped the ball; I don’t think I quite understood the next steps in setting it up.

Today we reviewed current law with a specialist attorney. This is much too complex a topic for me to fully describe in a blog post tonight, but I’ll share some of the key points I wrote about.

• Special needs trusts, supplemental needs trusts, and, I think, the new 529 ABLE plans all require proof of disability, specifically the inability to work with reasonable supports. (If you think about this too much your head will hurt — especially given current fashion (consensual hallucination) for non-adaptive workplace employment.)
• The assumption behind all of these plans is that #1, sooner or later, receives SSI benefits of $720/month and medical assistance (yeah, extreme poverty). The old-school approach was for the $720 to be paid to a care business which would use it for room and board and provide $92 (precisely) back for spending money. That approach is now being replaced by fairy dust and wishful thinking by something else that nobody quite understands yet.
• Somewhere to the side of these SSI payments are something called “waivers”; funds that can be used to pay for a personal care attendant. There used to be a special waiver program for developmental disability but those funds are exhausted. Now there’s one underfunded program of waivers that covers both physical and cognitive disability (CADI). These are not relevant for us quite yet.
• The “best” way to establish legal disability, and hence eligibility for what we’re interested in, is to receive SSI disability. That can take a while. An alternative route is to work with #1’s physicians on some legal disability statements. We’re doing both.
• In general, if you get money when you’re on SSI, through any means, you lose SSI contributions and your maximum bank balance is $2,000. Except see below.

Ok given the above, what about the ABLE and the Trusts?

• Special needs trusts are not of interest to us. These are funded by the disabled person’s money, typically as the result of a legal settlement.
• 529 ABLE plans are not yet operational. There’s real uncertainty about how much supervision/independent control there will be, and fees are likely to be relatively high. These can be funded at a maximum yearly contribution of $14K and a maximum total balance of $100,000. The money is under the direct control of the named beneficiary — which for #1 would mean huge candy purchases. If the beneficiary dies the balance typically goes to the state. I’m not clear on exactly what 529 money can be used for, I believe housing and education are the big ones. We’re not focused on these yet but depending on what they can be used for they might be a complement to supplemental needs trust.
• 529 ABLE plans can have tax-free investment growth, but unlike educational 529s they can’t be transferred.
• Supplemental needs trusts are what we’re doing now. Money from the supplemental needs trust doesn’t reduce benefits as long as it’s not paid directly to #1 and it’s used to buy “things”, like clothing and bicycles and iPhones and mobile service — but not “food or shelter”. Not shelter, that is, except that the trust can “contain” (own) the title to a residence. A supplemental needs trust has an associated taxpayer ID (the attorney gets this).
• The Supplemental Needs Trust is basically funded by our will. So there’s not much in it until we both die.
• The big deal with a Supplemental Needs Trust is real estate. Assume we buy a residence that #1 and others live in. While we’re alive we’d typically own it and he’d pay rent (legal requirement) out of SSI payments. When we die the Title is willed to the Trust, presumably along with money to pay taxes and the like. I think.
• The supplemental needs trust can be liquidated. There are no tax advantages to this trust.

Yes, this is a mess. I’ve probably mangled it, but it was in bad shape to begin with

 

See also:

• A grave problem with 529 plans and special needs children 5/2009
• Sundry notes from a meeting on special needs and the law 5/2009

Update 2/2016: 

Our attempt to work with #1’s psychiatrist on disability opinion was a dismal failure. She wanted nothing to do with it. I suspect that might be common. So I think SSI judgment may be only route.

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. 

Transferring 529 assets to siblings

Long ago we created 529 plans for our children; including #1. Even then we knew #1 wouldn't likely go to college, but we also knew that when the time came we could switch beneficiaries to #2 and/or #3.

That time has come. #1 is approaching an age where we will assume guardianship. At that time he will become officially disabled and receive state financial support. The assets we can provide will be channeled through a protected trust.

I have the beneficiary reassignment form; I have only to complete it and put it in the mail.

This is not an easy thing to do.

Special education in Minnesota - The MinnPost series on costs and funding

In the 1960s Minnesota education was a mess. It was funded entirely by property taxes; those who had the least need got the most funding, those with the greatest need got the least. [1] The disparities were egregious. Then, in 1971, came the "Minnesota Miracle". Education was increasingly funded through state taxes.

 

This worked very well for Minnesota, until, in 2002, Minnesotans elected GOP governor Tim Pawlenty and a Republican legislature. They reduced state funding and shifted overall funding back to property taxes; this benefitted their base and harmed the state.

 

Now, 11 years later, education in Minnesota is struggling. Not surprisingly, the effects are being felt most strongly in the funding of special needs education. MinnPost, a digital only nonprofit [2], has put a series together on the topic:

• Most vulnerable students to get one-two punch under sequester | MinnPost
• Meet the cross-subsidy, an increasingly painful way to pay for special ed | MinnPost
• The safety zone: Inside a school where no student's needs are too tough | MinnPost
• Legislative wish list crafted to better help schools' most challenging students | MinnPost
• Special education cross-subsidy: Where has it grown the fastest? | MinnPost

The Star Tribune has a also published a related article: Rising special ed cases are huge cost to Minnesota schools.

 

There's a lot of material in the articles. A few key takeaways, with the caveat that the articles are sometimes more anecdote than science:

• Some of the cost increases may be related to the education and support of students who, as recently as 10 years ago, might have been institutionalized. As we've learned more about educating special needs students, we're also handling more difficult challenges.
• There are three regional school districts that focus on special needs education, including New Hope's North Education Center in District 287. They serve about 3,600 students, of which 2,000 were referred in from a home district which pays the bill.
• The average MN student costs $11K/year to educate, the average special ed student costs about $20K/year to educate [2], and the students in the North Education Center supposedly cost $70K/year. [3]
• A "large" percentage of St Paul's severe EBD students are African-American and only 30% are ever in a regular classroom [4]. There is significant pressure to at least partly mainstream these students.
• St Paul's special education district spent @98 million on special education, but only received $62 million in state funding. In other words, special education services are an underfunded state mandate [8]. The remaining $36 million came from other educational programs; the term "cross subsidy" is sometimes used to describe this funds transfer [5].
• Obsolete rules mandating particular adaptive technologies waste money; iPads are much less expensive and much more desirable. [6] 
• The sequester will cut $7 million in Title I funds [7] and 9.2 million in federal special ed funding.
• The special-ed population has risen from 13-15% of the state's student body over the past 10 years. [9]

It's challenging to interpret these articles because, as my footnotes attest, there's a lot of missing data. My sense is that the overall demand is stable or slightly up, but that we are educating children who once received little education. Most of all, we are living with the damage done by Tim Pawlenty and his GOP legislature, and their reversal of the "Minnesota Miracle" educational funding system. That damage has been compounded by the Great Recession, demographic trends, and a shift from public to private/charter schools.

 

On the bright side, we are emerging from the Great Recession, the GOP are out of power for the moment, and the Accountable Care Act's mental health funding may allow schools to offload some of their services to the healthcare sector. From our experience, there are ways to improve the quality of special care education while also reducing the costs -- though they may require some 'no-child-left-behind' reforms. We can certainly change laws that mandate use of expensive and obsolete technologies.

 

There are issues here, but they aren't insurmountable.

 

- fn -

 

[1] American public education is often funded through taxes on property. Most nations think this is insane, and a major contributor to America's socioeconomic distress. Most nations are correct.

[2] We donate.

[3] We have two children in special ed. #1 is in a modified track, # in an adapted track. It would be interesting to see where the extra 10K goes; I suspect it's partly for speech and occupational therapy. There's also a lot of administrative overhead in managing special ed students.

[4] How large? No data. 

[5] The 2007-2008 budget was 630 million. Assuming it's now about 660 million, the cross-subsidy would be very roughly a 7% "tax" on other programs but in some articles this is described as 20%. The descriptions of what is meant by "cross subsidy" are not always clear.

[6] I've read that elsewhere. The rules require the devices be single purpose, that rules out modern adaptive devices.

[7] Poverty focused funding, but that includes many special ed students.

[8] Unfunded mandates are a common political vice.

[9] We don't know how much of this arose because of shifts of students out of public schools to private schools, or if this number counts charter schools. Given "wealthy flight" in MN over the past decade this might be little true change.

Autism redefined - DSM 5 and the services dilemma

I've claimed frequently over the past six years that the diagnostic term "autism" is virtually meaningless. That doesn't mean this is entirely a good idea ...

New Definition of Autism May Exclude Many, Study Suggests - Benedict Carey - NYTimes.com

Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests...

... The definition is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. The D.S.M., as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions. Most experts expect that the new manual will narrow the criteria for autism; the question is how sharply...

... Under the current criteria, a person can qualify for the diagnosis by exhibiting 6 or more of 12 behaviors; under the proposed definition, the person would have to exhibit 3 deficits in social interaction and communication and at least 2 repetitive behaviors, a much narrower menu...

Obviously, I agree with the DSM authors that the current definition of "autism" is not particularly useful. On the other hand, it's tied by law and legislation to a wide range of services and protections. So we need to be very careful about we replace it with. This is particularly important during our current era of slow economic growth, capture of that feeble growth by the most wealth Americans, and a rapidly aging population. There are ever more legitimate and powerful competitors for special needs funds; reclassification will be embraced as a big money saving opportunity.

To be sure, the fundamental problem is that "autism" gets special treatment over other brain disorders (ex: schizophrenia). There's no logical reason why this should be true, or why children in some school districts with "learning disabilities" get support while children with low IQ don't. That's why nobody has "mental retardation" any more; why assign a meaningless diagnosis when another equally meaningless diagnosis provides better services? For us doctors, that's a "no brainer".

We need to fix that problem, but it's not going to disappear. So any reclassification better have big returns. A new classification has to have a big impact on research, treatment, prognostic accuracy or management. This refactoring of the DSM classification doesn't promise much of anything -- except cost savings.

If there isn't a big impact, then we might as well flip the problem around, and redefine "autism" as "cognitive disability, cause unknown". That way we keep the legal protections and services associated with the word "autism", we expand those services to cover everyone who needs them, and we start with an intellectually honest classification that promises nothing and delivers nothing.

Then we start afresh - and begin to classify brain dysfunction based on pathophysiology and objective assessments.

See also:

• Very annoying: the diagnostic criteria for  are not all that useful 11/2005
• Autism turns into Asperger's - how did that happen? 5/2008
• Redefining mental retardation and autism - the revolution ahead 3/2006
• Psychiatric diagnoses: 200 years behind 11/2006
• Autism no more -- the end of a diagnosis 12/2006
• Autism: the label given to a wide and diverse variety of neurodevelopmental disorders 5/2007
• The end of autism 12/2009
• Rethinking neuropsychiatric diagnoses 9/2010
• Victory: The war against 20th century psychiatric diagnoses is all but won 12/2010
• The twilight of "schizophrenia" 4/2011

Adapting to fewer resources for special needs children and adults

The future is looking kind of gloomy for most Americans ...

Care of special needs adults in post-employment America

... the Great Recession grinds on. The percent of employed adult Americans (employment-population ratio) is now back to where it was in 1976, when most women weren't in the workforce. The annual incomes of the bottom 90% of US families has been flat since 1973...

Some Americans are astoundingly wealthy, but most of us are not. The direct and indirect costs of care of a disabled child, or adult, means special needs families were stressed even when American social supports were relatively robust. Now things are getting harder ...

... Many young adults with autism have transitioned into large residential systems, whether group homes or institutions, offering round-the-clock services. But waiting lists can be long. And increasingly, in an effort to stem costs, states are moving away from the group home model into family-based care, a trend that started about 10 years ago.

... Nationwide, 59 percent of people who receive autism services are living with their families, according to Mr. Lakin...

... Don Meyer, the founder and director of the Sibling Support Project and the creator of Sibshops, a network of programs for young siblings of children with special needs, said: “Parents need to share their plans for their special-needs child with their typically developing kids. After Mom and Dad are no longer there, it is likely it will be the brothers and sisters who will ensure their sibling leads a dignified life, living and working in the community.”...

We are now seeing long group waiting lists in Minnesota, yet we aren't yet seeing the direct cash transfers to families that are reported in Connecticut, Arizona, Vermont and New Hamphsire. In place of group homes we now have "housing access services" -- suited for persons who can live independently.

We're going to have to figure out how to adapt to this. I have ideas, but I need more people ...

Wealth and med choice: the antipsychotics

Interesting results, annoyingly inflammatory interpretation ...

Children on Medicaid Found More Likely to Get Antipsychotics - NYTimes.com

New federally financed drug research reveals a stark disparity: children covered by Medicaid are given powerful antipsychotic medicines at a rate four times higher than children whose parents have private insurance. And the Medicaid children are more likely to receive the drugs for less severe conditions than their middle-class counterparts, the data shows.

Those findings, by a team from Rutgers and Columbia, are almost certain to add fuel to a long-running debate. Do too many children from poor families receive powerful psychiatric drugs not because they actually need them — but because it is deemed the most efficient and cost-effective way to control problems that may be handled much differently for middle-class children?...

These sorts of studies irritate me. Not because they're unimportant, but because they are relatively easy to do, they are prone to error in interpreting diagnostic data, the level of discussion is usually weak, and there's rarely any follow-up. To be meaningful we'd have to fund far more difficult and expensive ethnographic studies (aka "qualitative research"). We rarely do that.

I have two early thoughts about this particular study. The relatively trivial one concerns the "conditions" clause. This usually refers to ICD-9 coded diagnoses (sometimes DSM coded, which is a hacked offshoot of ICD-9). Since these diagnoses are crafted to meet insurance reimbursement rules they are strongly influenced by payment source. So they are not a reliable data source for this kind of study.

The more interesting discussion point concerns what is meant by "actually need them" and "cost-effective". We have personal experience, as we have one child whose consulting pediatric psychiatrist long offered the use of anti-psychotic meds. We were able to avoid their use, but only because we have relatively large resources in many dimensions. Managing some autism-spectrum/"explosive child" disorders without, or even with, the most powerful available medications is extraordinarily challenging.

Our choice to forego their use was not based on a great dislike of these medications. If we had failed we would have used them. We might need them in the future. It is rather that we had relatively great, but not inexhaustible, private resources. The differentiator was not what our insurance could pay, but rather what we by virtue of training, education, income and temperament were able to do.

No society, not even Sweden or Norway, would be able to provide similar resources to every needful child. We should expect antipsychotic medications to be used more often among those with fewer private resources.

Four times more often? That does need to be investigated -- but remember that the billing diagnostic data is suspect, and that many of these conditions have a hereditary compoment. They may impact the parents, and impacted parents will be far more common in the medicaid population (because, of course, their income will be very low).

Now that I've said all of the above, I'll switch to the other side of the debate. There are almost no medicaid psychiatrists, and even fewer medicaid pediatric psychiatrists. Heck, there are almost no psychiatrists anywhere. There is a smoldering crisis in the expert psychiatric care of poor children. I would be very interested in a study comparing the use of antipsychotic medications in medicaid American children vs. a comparable Canadian group. Even with all of the objections I've raised, I can believe this is a major contributor to the findings. We need either to pay medicaid psychiatrists far more money, or we need to find an alternative way to deliver psychiatric-type services to this population.

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.