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

Minnesota adoption assistance and disability support

We have been told, and I think this is true, that if a Minnesota child with a cognitive disability receives state adoption assistance, which includes medicaid coverage it’s not possible to get disability support until the adoption assistance ends at age 21. 

It appears to be an unwritten rule. I wonder if in some cases it would be better, with a special needs adoption, to forego the adoption assistance and take the disability path instead. I’m sure this exclusion is an unintended consequence.

The transition from medicaid coverage under adoption assistance to medicaid coverage under the disability program is not instantaneous. There will be a gap. Moving from childhood disability to adult disability is not fun.

How might Individual Retirement Account savings impact future disability related income support?

Unexpectedly, #1 is working 20hrs a week in an unsupported employment situation. Not enough to live on, but it makes qualifying for Supplemental Security Income (SSI) as disabled more difficult. Not to mention health insurance. Or financial planning beyond my grave, such as supplemental needs trusts and 529 Able plans.

Life with a cognitive disability is much trickier than it was just a few years ago.

So now he’s paying social security taxes and he could put money in a personal IRA. But how would that impact any future SSI payments? The maximal bank balance on SSI is $2000, but does that include IRA assets?

The best explanation I found online is from the SSA, I think this is the key line: “…anything else you own which could be changed to cash and used for food or shelter …”. Since disability allows early withdrawals from an IRA any savings therein would not be sheltered.

So he probably shouldn’t start an IRA. Looking at the list of things that don’t count as material assets the main exclusions are either a vehicle (he doesn’t drive) or a home that one lives in (talk about a benefit that goes to the relatively wealthy) …

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.

Cognitive disability and AI assistance with Google Inbox.app. Suddenly, a new world.

Google announced nsAI (non-sentient artificial intelligence) assisted email today, it will debut in the Android and iOS Inbox.app.

My first thought was that this will be kind of annoying. A few minutes later I was thinking about AI-responses generating AI-responses and the various spam implications. I decided this would be interesting, exciting, maybe a bit scary. There will certainly be unexpected consequences.

Then I remembered how much iOS word and phrase completion has helped #1 son with texting and email. I remembered that I’ve been watching for more nsAI assistance to support both of my sons. 

That’s when I realized how big this announcement really is.

I’ve reinstalled Inbox.app on my iPhone and Ill be planning how to transition both of my sons to the new platform and how to introduce the concepts of nsAI assistance to our local educational system.

This is how the future comes crashing in.

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.

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. 

Changing landscape of adult special needs: Housing in the Twin Cities

As our eldest heads towards his last year of High School we’ve been focusing on the housing and employment landscapes. Focus is hard, because both housing and employment options are changing quickly.

I’ve been thinking through the bigger picture of what’s going on, which has something to do with demographic squeeze (aging boomers), slow economic growth (aka “secular stagnation”), the large role prisons play in American special needs housing [1], ethnicity and special needs services, Baumol’s Cost Disease, reaction to scandals like ’The Boys in the Bunkhouse’, the Minnesota Meto case, Staten Island’s horrific Willowbrook State School [2] and to the history of sheltered workshops for the blind. All summing to well intentioned but fuzzy thinking that recapitulates the idealistic failure of deinstitutionalization - including mixing cost reduction with reform.

Ok, I really do need to write that post — which is to include a survey of what’s happening in Europe and Canada. Someday - but not today. Today is an edited contribution from an anonymous contributor on the current state of special needs housing in Minnesota taken from a recent meeting in the Twin Cities (emphases mine). This complements notes from a similar Nov 2013 meeting.

[meeting was]… run by Sean Burke, a lawyer with MN Disability Law Center, who is on a housing law fellowship there (paid with money donated to the law center to fund his work in this area—3 cheers to someone)

 

…. Sean says state and counties are still establishing guidelines and rules for how the housing rules will work.  Next couple of years will be important in rule development.  Laws are changing, but could cause unintended problems, and lose some of the group home advantages--eg safety.  He believes can be good opportunities however, for better living without problems that did exist in poorly run group homes, which could resemble mini institutions.

 

Compares it to the IEP process, where it has taken 30 years for schools to come to terms with what the Disabilities Act requires them to do.  Says we need to approach this as we do IEP--with an idea of what we want to ask for.  If we wait for them to propose what they are willing to do, it will be smaller and less.

 

NB: I was thinking that I was really going to miss the yearly IEP process when the kids graduate from high school; but now happily we get to do it for the rest of our lives!

 

… 1980s—reaction to Willowbrook etc—Feds authorized money for HCBS (home and community based services): Federal tool/mandate to take institutional money and use it for community services (although these not defined).  Suspect Texas used this money to send young adults to work in Iowa turkey farm.  MN used this money in 1980s to establish 4 person group home model, run by private businesses.  This has lasted until last 5 years or so.  

 

State of MN said in 2009 no more group homes to be established [Pawlenty/GOP administration].  Seems like combination of Fed response to lawsuits, re institutionalization,  and MN response to expense of group homes.  This sudden change has everyone trying to figure out what can be done and what money there is for it.  

 

MN is developing an “Olmstead Plan” for this purpose— taking its name from the Supreme Court decision Olmstead vs Zimring in 1999, where the state of Georgia was told it needed to find community based services for cognitively disabled people who wanted them....

 

Also, as of this year “community setting” is now finally defined by feds—10 features. There is a particular focus on privacy and choice as defining a community setting. There is real concern that the well regarded Fraser apartment building with only disabled residents will not meet the “community setting” criteria.

 

Three parent and family scenarios were presented, all with cognitively disabled children in 20s.

 

D lives in duplex shared with his parents.  1/3 time staff care, paid for with CDCS waiver, rest of time including overnight is parent care.  They are not sure this will be final solution, but now feel that can take a few tries to find what works, don't need perfect plan at start.  Their CDCS waiver pays less than a DD waiver, but lets them have more flexibility about how they can use the money--most used for PCAs, some used for technology in his apt, some for a personal trainer, some for transportation, etc.  His home has a space for sensory things, a space for quiet things, a good chair..

 

They did not like the day programs they visited … so plan his days themselves with use of Highland Friendship club activities and personal trainer, trips with PCA etc.

 

They used the "Person Centered Planning" process to develop this plan, a formal process that the waiver can pay for (ARC can do this--called Lifetime Assistance Planning).  They found a team of people to be involved with D —trainer, neighbor who checks in, family friend to be maintenance guy.  These roles are specified in the plan.  They feel these people will remain involved if parents die.

 

… They had to negotiate all of the above arrangement with the state, who will do “assessments” of the needs of the people getting wavered services.  The state has to agree with the family housing plan.  The family found that the state risk assessment gave the the evidence they needed to get the monitoring technology in D’s home paid for by the waiver, however.

 

D gets SSI (about $750/mo) and “MN supplement mental aid shelter needy” or MSA Shelter Needy ($200/mo) plus food stamps $51/mo...

 

M lives at home.  He gets about $760/mo Soc Security disability, he does not work.

 

B lives in a home owned by his father with 2 other cognitively disabled young men…  did a lot of work with state and county to establish this house, an example of an IHO (independent housing option—a term used by the counties, basically means anything that is not a group home).  B has a DD waiver (started with a CDCS waiver, hard work to convert it to a DD waiver a few years ago).

 

B goes to center based DTH (day training and habilitation) at Merrick, where he gets vocational training, and B and housemates have staff in the home from a licensed service provider approved by the waiver board.  One of B’s housemates has a job at Davannis through Merrick.  Also get money from SSI and RSDI  (retirement and survivors disability insurance?), plus MSA shelter needy $200/mo, and $16 food stamps/mo.  Plus he earns about $200/mo.  

 

The IHO setup was complex. It required working with an existing group home, learning to structure an IHO, and writing an RFP

 

When talked to county about how much money available, was told “you won’t get as much money with an IHO as in a group home".  After extensive pressure found B was eligible for $155/day for a group home, they managed to get 80% of that for the IHO.

 

All say the evaluation process is in flux, and the parental fees are in flux.

 

Parents worry about loneliness in a parent shared duplex, about segregation in an IHO.  Also has been a problem that with live in staff, there can be confusion about whose house it is—the staff’s or the person with disabilities’, can use rotating staff for overnights to prevent this problem. Some parents wish for a cooperative housing example—like in the 60s—separate bedrooms with a common living area and shared meals, and mix of disabled and non disabled residents. That does not exist now. 

 

I asked Sean whether the state is trying to avoid what happened with mentally ill in the 70s—he thinks that state will pay what needed to get the community services, MN is just a good state that way.

 

Sean says that there are other HCBS services and money that can be used for housing if your child does not get a waiver. Also that in this time of change, keep talking to everyone you know. 

[1] And long term care of mentally ill too.

Developmental disabilities and sheltered workshops: "free" to starve?

This April 2014 announcement portrays the end of supported employment for the cognitively impaired as a victory similar to the ADA’s benefit for the physically disabled … (excerpts and emphases mine):

Rhode Island Settles Case on Jobs for the Disabled - NYTimes.com

The Justice Department on Tuesday announced a “landmark” agreement with the State of Rhode Island to free people with developmental disabilities from a decades-old system that kept them unjustly segregated in sheltered workshops and adult day programs, removed from the competitive workplace and the broader community.

The settlement, which addresses the civil rights of about 3,250 Rhode Island residents, also provides a road map to compliance for the 49 other states, federal officials said. They estimated that across the country, 450,000 people with intellectual and developmental disabilities while away their days in essentially cloistered environments…

… people with developmental disabilities and aspirations who spent years stuck in sheltered workshops that financially exploited them.

There was, for example, Steven Porcelli, 50, of North Providence. In a telephone interview before Tuesday’s announcement, he recalled graduating from high school, working briefly at a hardware store, and then being sent to a sheltered workshop run by a nonprofit company called Training Thru Placement.

For about $2 an hour, Mr. Porcelli assembled jewelry, packed medical supplies into boxes, grated cheese and stuffed peppers for an Italian food company. All along, he said, “I did want another job, because that’s what it was supposed to be: training through placement.”

“I was there for 30 years,” Mr. Porcelli added. “I was doing piecework most of the time, which I didn’t like too much.”

Jocelyn Samuels, the acting assistant attorney general for the Justice Department’s Civil Rights Division, cited Mr. Porcelli’s case, among others, in unveiling what she called the “landmark settlement” to address the “unnecessary segregation” of sheltered workshops and day facilities.

“We cannot wait another day to change,” Ms. Samuels said. “And we won’t.”

Under the agreement, Rhode Island — which federal officials praised for recognizing and embracing the need for reform — has 10 years to do the following to resolve violations of the Americans With Disabilities Act:

■ Help state residents with developmental disabilities obtain typical jobs in the community that pay at least the minimum wage and offer the maximum number of hours consistent with the employee’s abilities and preferences;

■ Provide support for nonwork activities in the mainstream, including community centers, libraries, and recreational and educational facilities;

■ Prepare high school-age students with developmental disabilities for competitive jobs in the community through internships and mentoring programs, among other efforts;

■ Redirect the “significant” public funds that are used to support segregated settings toward encouraging services in integrated settings.

… They determined that Rhode Island had “over relied” on segregated settings, to the exclusion of integrated alternatives. About 80 percent of the people with developmental disabilities who were receiving state services — about 2,700 people — were placed in segregated sheltered workshops and facility-based programs.

In addition, only about 5 percent of the young people with developmental disabilities leaving secondary schools from 2010 to 2012 went on to jobs in integrated settings — even though many were capable of working in the competitive workplace.

Federal and state officials said they had received a positive response from businesses to the reforms. They said that the U.S. Business Leadership Network, a network of Fortune 500 companies, and Walgreens would sponsor a business summit meeting in Rhode Island in June to explore ways to expand the training and employment of people with development disabilities.

Ms. Samuels explained that those employed in sheltered workshops would be exposed to other opportunities, but would be allowed to remain in the workshops if that is their preference. “We are not shutting them down,” she said.

Mr. Porcelli, though, has moved on to a new job, doing office work and some computer training at Automated Business Solutions, a small business in Warwick. He said he enjoyed being in competitive employment because, he said, “I feel more accomplished.”

What a pile of horse shit.

The money that was spent on sheltered workshops is to be redirected to “encouraging” services, and “exposing” opportunities - in a world where most low cognition jobs have vanished to automation and globalization - and they aren’t coming back.

Will the cognitively impaired get special positions in the long, long lines for minimum wage high stress Walmart jobs? How well will that be received? Will ADA style lawsuits mandate the restoration of mail rooms, human staffed factories, filing cabinets and gas station attendants?

Oh - and the workshops “won’t be shut down” after the funding is “redirected”? I have no words for that.

This is the second coming of emptying psychiatric institutions — and dumping schizophrenics to die on the streets.

Yes, we need more employment options and vastly better transition and lifelong learning programs — but closing sheltered workshops for the cognitively disabled is not the answer.

Special needs in Minnesota - notes from an ARC and family sponsored meeting

I joined a meeting tonight hosted by Arc Minnesota [1] which was both an opportunity to learn from the work of the local Bender family and a chance to chat with a few local politicians (all of whom I voted for of course).

Unfortunately I was delayed and missed part of the meeting, but I'll share some of the issues that came up. There's much more on these topics in a post from last year - Transition and employment - notes from a Minnesota presentation.

•  I heard some good things about the Legacy Endeavors, I think they'd be categorized as a "supported Employment Service Provider" though I'm fuzzy on the divisions.
• Arc is pushing for a 5% increase in reimbursement for aides and other caregivers in the special needs system. They've gone a long time with no salary increases.
• The ACA is reducing or eliminating the "parental fees" associated with buying into medical assistance (TEFRA) (!)
• Minnesota's Olmstead plan, which came out of a court settlement following the meto case, is starting to turn into laws. There's a focus on licensing and quality improvement for provider organizations and moving towards individual annual budgets and "increased flexibility" [2]. A long promised self-directed support option for personal are attendants might become real.
• There's some legislative pressure to limit use of family members as paid Personal Care Attendants due to vague fears of fraud and abuse. This practice is most common amongst 'communities of color' . The common pattern in special needs services is to put in place so many 'fraud and abuse' safeguards that programs become almost useless.
• The Federal move to limit use of group homes realized most of its money savings from reducing 24 hour surveillance costs.
• Minnesota schools are have accelerated inclusion programs in late High School. Personally we haven't noticed any changes - certainly not any improvements. (For example.)
• States vary in how they deal with maintenance of disability benefits when income rises above poverty level. Minnesota is particularly harsh -- ensuring special needs persons with disabilities will be just barely out of federal poverty. There didn't seem to be a lot of energy for changing this.

[1] I believe The Arc used to be A.R.C, and the R stood for what you might expect. Now it's an "Arc" as in the curvy thing. Incidentally, The Arc has a legislative blog. I had no idea - I've added it to the MSP special needs search engine.

[2] "Flexibility" can be a euphemism for "free to do whatever you want and here's a ticket out of town". We'll see.

Connect WC: a superb MN resource for children and adults with developmental disabilities

Washington County is a predominantly exurban and suburban region west of the Twin Cities. I didn't expect it to be the home of well done website on Developmental Disabilities Resources and Information funded by the CCP Foundation [1]. Some of the material is Minnesota specific, but much of it applies anywhere in the US. Only a few topics are truly specific to Washington County.

I learned a few things about developmental disability options in our region -- and that doesn't happen too often. Some the pages to check out include:

• Sports
• Entering Adulthood: I didn't know my son could get a 50 cent (!) reduced fee ID card.
• Dating, Relationships & Sexuality

Despite the web site description, they mix physical and cognitive disability resources. They could perhaps do a better job separating those, but many people with cognitive disability also have physical disabilities.

 

This may be the best web site on special needs services I've seen anywhere - certainly the best in Minnesota. I've added this domain to the Google Custom Search for special needs services in Minneapolis and St Paul.

 

[1] Alas, its grant program just ended.

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.

Title IX for disabled student sports?

I've had concerns with my #1's school, but some very dedicated teachers have provided him with adapted floor hockey and adapted soccer activities. For him this time is more valuable than most of his coursework.

The exercise is good -- adapted floor hockey is more work than I'd naively expected. The social activity is more important though. He's able to work and play with his peers. 

It wasn't easy for his teachers and the schools to put these programs together. They have to work around the fuzzy boundaries of "CI" and "PI", a divide that predates autism spectrum disorder. His teammates are technically "PI" (physically impaired) but most have some degree of "CI" (cognitive impairment) as well. In his case the CI is significant and the PI a bit of a stretch -- but "pure" CI opportunities are very limited.

For #2 son, who has "high functioning" autism, there are no school sport options. Whereas #1 has a relatively easy time joining adapted or mainstream sports teams, #2 would need some inventiveness. (He does quite a few sports -- but on his own terms.)

For both of my boys, and for special needs students in general, there may be some good news on sports access....

Education Dept. Clarifies Law on Disabled Students’ Access to Sports - NYTimes.com

The Education Department’s Office for Civil Rights clarified legal obligations Friday for school districts in providing access to sports for students with disabilities....

... The guidance concerns Section 504 of the Rehabilitation Act of 1973, a law that deals with the rights of disabled people who participate in activities that receive federal dollars.

A school district ‘is required to provide a qualified student with a disability an opportunity to benefit from the school district’s program equal to that of students without disabilities,’ according to the Education Department.

Advocates for disabled athletes, some of whom have pressed legal claims against state athletic associations in recent years, praised the clarification of rules and said that as a result, participation for disabled athletes could rise.

‘This is a landmark moment for students with disabilities,’ Terri Lakowski, chief executive of Active Policy Solutions, a Washington-based advocacy group, said. ‘It will do for kids with disabilities what Title IX did for women. This level of clarity has been missing for years.’

At least 12 states have passed laws in recent years requiring schools to include disabled students in sports and other extracurricular programs, and the Education Department’s guidance is considered a complement to those laws.

‘Taking them together with the state laws means more opportunities for disabled athletes,’ Lakowski said. According to the department, a district’s legal obligation to comply ‘supersedes any rule of any association, organization, club or league that would render a student ineligible to participate, or limit the eligibility of a student to participate’ based on disability...

That sounds encouraging. But ..

... No student with a disability is guaranteed a spot on an athletic team for which other students must try out, according to the Education Department. But districts must ‘afford qualified students with disabilities an equal opportunity for participation in extracurricular athletics in an integrated manner to the maximum extent appropriate to the needs of the student.’ ...

That sounds like it's meaningless.

I think it's premature to call this "Title IX" for disabled sports access, even if we remember that it took a lot of lawsuits to make Title IX more than words. I'll go with "encouraging" for now, but we need to watch where this goes. It may make a difference if litigation is needed.

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.

Congress Passes Mental Health Parity Bill

Bush says he'll sign. This is a big step forward for all children and adults with special needs, though the primary focus is on the adult psychiatric disorders ...

Health Blog : Congress Passes Mental Health Parity Bill

The long fight over putting the coverage of mental health on par with other health conditions is nearly over.

Both houses of Congress yesterday passed bills that would prohibit employers who offer mental health coverage from doing things like charging higher co-pays for mental health services than for other kinds of health care. That’s long been a common practice...

.... Kennedy, who has battled substance abuse, is a Rhode Island Dem. and a sponsor of the bill. His dad, Sen. Ted Kennedy, now battling brain cancer, has been a champion of the legislation in the Senate.

The legislation exempts businesses with fewer than 50 employees. That’s one of several compromises that won the bill broad support from the business community and the Bush administration.

The House passed the language as a stand-alone bill (online here), while the Senate included it in another measure. So they’ll have to come to a joint agreement about what form the measure will take to be sent off to the White House for the president’s signature.

People who suffer from chronic depression will pay much less for health care, but those who do not will pay slightly more. That's the way insurance works, it's a good thing.

Palin cut special needs funding by 62%

She made these cuts while Alaska's oil revenue was booming.

Grasping Reality with Both Hands: The Semi-Daily Journal Economist Brad DeLong

[Palin]:

To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House.

But then you read:

However, a comment here notes that Palin actually slashed funding for schools for special needs kids by 62%. Budgets: FY 2007 (pre-Palin), 2008, 2009 (all pdfs).

This is consistent with her political record and ideology.

We already know McCain's dismal attitude towards support for disabled persons, and Obama's strong policy position.

A vote for McCain/Palin is a vote against our children and loved ones.

The candidates and disability policy

Crooked Timber's Michael Berube has summarized the disability policies of the three contending candidates:

Crooked Timber -- Disability and Democracy.

McCain's policy is fairly simple ...

... Yes, well, McCain’s disability policy is much easier to summarize: (a): we need to cut costs; and, following from (a), (b): don’t become disabled...

Clinton does a very good job ...

... A Hillary Clinton Administration would be quite good on disability/ health and disability/ employment, and generally good for my kid – this one, not the college senior who turns 22 today...

but her web site does a poor job of displaying her disability policies.

Obama's plan is "... remarkably enough, at once broader and more specific than Clinton’s". For example:

... proposes “a comprehensive study of students with disabilities and transition to work and higher education” – something that (a) has never been done and (b) is of great interest to teenagers with disabilities and their loved ones. “As president,” we’re told, “Barack Obama will initiate such a study and task his Secretary of Education with researching: the barriers that keep students with disabilities from seeking and completing higher education; the barriers that prevent students from making a direct transition to work; the extent to which students with disabilities are able to access loans and grants; reasons college students with disabilities drop out at a higher rate; and best practices from schools that have effectively recruited and graduated students with disabilities that can be implemented more widely.” This is, as you might imagine, a (cough) special interest of mine. But that’s not just because I have a 16-year-old with Down syndrome. In recent years I’ve had many fine students at Penn State – twenty-year-olds with dyslexia, or Asperger’s Syndrome, or arthritis, or mild cerebral palsy – request “reasonable accommodation” from me on final exams. And I’ve been amazed and appalled at how few many of my colleagues (here or elsewhere) seem to believe that they’re under no obligation to provide reasonable accommodation for everyone. (Guess what? If you teach in the United States, you have that obligation! It’s a real federal law!) So I’m thinking that “a comprehensive study of students with disabilities and transition to work and higher education” might not be a time-wasting exercise for disabliity-policy wonks. I’m thinking that it might actually make a world of difference for students with disabilities – in high school, in transition, and in college...

Among the topics Berube reviews are:

• limitations on the ability of insurers to discriminate on the basis of preexisting conditions
• fudning of IDEA (the grossly under-funded Individuals with Disabilities Education Act).
• federal employment support for persons with disabilities
• Tom Harkin's ADA Restoration Act (overturn Supreme Court decisions that have limited the ADA's scope).
• Genetic Information Nondiscrimination Act (GINA), which prohibits discrimination on the basis of genetic information by employers and health insurers. (Tom Coburn has blocked passage of this in the Senate).

The bottom line of course is that either Hilary or Obama are light years better than McCain for persons with disabilities and their supporters.

The effective cessation of Minnesota's waiver services program for persons with cognitive disabilities

Two months ago I wrote about Waivered services and the Personal Care Attendant program:

.... Which brings me back to the PCA (personal care attendant) topic. The AuSM has an excellent handout called Services for Children with ASD (scan PDF 103K) I'll summarize here and expand upon:

• TEFRA: medical assistance, but qualification based on disability ... TEFRA will help pay for PCA Services and Waivered services.
• PCA services (see esp MN PCA Choice Option)....
  
• Waivered services (see MR/RC (mental retardation) waiver and CADI waiver). The CDSC waiver option (consumer-directed community supports) "parents of minors may be paid for daily care tasks." This has a special appeal for us (below)...

Recently my wife attended a seminar that included a discussion of waivered services. The bottom line -- the DD waivered services program is out of money and is well into yet another crisis of care. I'll run through some history and summarize the current story.

Developmental disability (DD or MR/RC (mental retardation) waiver) waivers began in 1981, as part of an effort to move persons with mental retardation/DD out of CF-MR facilities (institutional care facitlity for mental retardation). Families and guardians received the money equivalent to the cost of institutional care, and the threshold for funding was set at the level of disability requiring institutionalization in 1981.

Now there are waivers for DD, CADI (people <65 style="font-style: italic;">hey pay more in fees than they get in funds.

The funds do not increase once the client is out of school at age 21.

Essentially the program has been on a downward spiral since 1981, but it gets worse. The DD waiver program used for persons with autism and mental retardation is not getting any more waivers? [I need to clarify if is a funding freeze or a reduction.]

The waiting list is long for what waivers exist, and you move up it depending on the intensity of your need. It will be a long long time before anyone without a crisis of care gets one of these waivers -- when pressed, the speaker thought you could wait 5-10 years or longer. One consequence is adults with DD no longer have funds available to move out of their parents home. Eventually the parents are too aged to care for the children ...

So in 1981 persons with DD were institutionalized. Then the institutions were closed, but the funds went to the community. Now the funds are going away, but there are no more institutions.

The CADI (nursing home level disability) waiver still available. It requires full disability requiring nursing home level care. These have primarily been used physically disabled people and persons with schizophrenia or other severe mental health disorders. In some areas they are being used for the DD population.

In addition to the above we learned of the following MN programs:

• community support grant: up to $11K or so per year, have to have MA, can't use for PCA but does provide flexibility
• family support grant: $250 per month, income limit about $85K
• 2009 may bring a new program -- 1915J. I found this blurb: "The 2007 Minnesota Legislature authorized the Department of Human Services (DHS) to pursue approval of a state plan amendment for implementing a self-directed supports option in Minnesota. The amendment, referred to as the 1915(j), would allow Medical Assistance (MA) beneficiaries to be in charge of their own personal care services (PCA), instead of having those services delivered by an agency."

I'll update this with corrections and additions.

Autism Society of Minnesota: Recommendations, PCA infrormation

We've been taking "Sam" to the Eagle's Nest social skills program at the Autism Society of Minnesota. I think it's somewhat helpful for him [1], though it's designed more for children like Sam's brother "Nick". Nick is up next, though that will take a carefully coercive mixture of bribes and consequences.

The real value for us though has been the parents session led by an expert counselor with serious personal experience with "the spectrum". The "AuSM" also has q1-2 week skillshop topics and an excellent member's only Lending Library (click to browse collection): "Library materials are available for loan to all current AuSM members. You may check out up to 6 items for 3 weeks at a time."

In particular we've been learning more about schools (Junior High looms in 1.3 years), SSI, and PCA services.

Form what we've learned and seen there's no simple Junior High answer for "Sam". We have, however, learned of arrangements that will work for "Nick", such as leaving classes 2-3 minutes early to avoid the hallway pandemonium. For "Sam" we need something more like Lionsgate, which is massively oversubscribed even before it's operational. We're thinking hard.

Beyond High School are programs like Minnesota Life College (private, $$), school district "transition services", and SSI (social security disability).

The SSI bit is important for all children with developmental disabilities. Most will need to apply for SSI disability on their 18th birthday (if not earlier). Apparently if one waits too long to apply for SSI some "window" for developmental SSI closes, and one is eligible only the American's ridiculously small standard SSI ($370/month - enough for heat maybe).

Which brings me back to the PCA (personal care attendant) topic. The AuSM has an excellent handout called Services for Children with ASD (scan PDF 103K) I'll summarize here and expand upon:

• TEFRA: medical assistance, but qualification based on disability. If a child is on Medical Assistance (ex: foster adoption) or qualifies for SSI (disability) they don't need TEFRA. TEFRA has a family fee. TEFRA will help pay for PCA Services and Waivered services.
• PCA services (see esp MN PCA Choice Option). If two children in a family qualify an incremental amount is available above the usual family rate. (See also my PCA comments, below.)
  
• Waivered services (see MR/RC (mental retardation) waiver and CADI waiver). The CDSC waiver option (consumer-directed community supports) "parents of minors may be paid for daily care tasks." This has a special appeal for us (below).

The CDSC waiver option is where we want to go. We've had PCA services for "Sam" for years (see also: PCA things I wish I'd known), but have never applied for services for "Nick" -- though he would probably qualify. Over this time we've followed the conventional route of engaging an agency who takes a substantial cut of the stipend and is supposed to do background checks, training, hiring, etc. This hasn't always worked out well, and with the departure of our latest PCA we're resolved to do something differently.

Our special challenge is that Sam makes everyday high functioning autism look simple by comparison. We need a PCA with vast patience, creativity, affection, empathy, physical durability, training athletic capacity, maturity, reliability, and knowledge of swimming, golf, fishing, paddling, horseback riding, bicycling, inline skating, hockey, ice skating, skiing/snowboarding, and baseball (latter at a high school level). Experience with autism, ADD, EBD, ODD, and anxiety disorder a plus. Must be willing to work for very little money on weekends and nights.

I think the problem is clear. Sam needs his parents to manage him -- nobody else can do that.

So, what we need is an extra set of hands, with a secondary focus on helping Sam's sibs, including a neurotypical child. A nanny with a bit of special needs experience, or just empathy and wisdom, would do very well. If we could get a CDSC waiver we'd be able to the money paid "us" to buy services for the entire family -- freeing up time and energy to keep all the balls in the air.

So that's our latest project. As we push that along we've also learned of two recommended PCA agencies for waivers and other variations and a woman who works as a "Flexible Case Manager" (a role that may be related to the waiver programs.)

• LifeWorks customized support services: "A shift in funding in Minnesota in 1999 gives people with disabilities and their families more control over the services they receive. Lifeworks’ Customized Support Services (CSS) offers the Agency with Choice and Fiscal Support Entity services required for families to access these waivered funds. This allows children to continue to live at home, gives families the freedom to live a more normal life, and saves money for Minnesota taxpayers." I'm told a typical cost might be $175/month for their services.
• St. David's Child Development and Family Services (Minneotonka): "St. David’s offers an additional service option that individuals or families can choose under the PCA program model called PCA Choice. For this service option, the client or family is responsible for interviewing, hiring, training and supervising any staff. The individual or client enters into a written agreement with St. David’s for billing and payroll services."

[1] Sam almost does very well in these settings. It's unstructured settings where the challenges come out.

PCA: Beware the agency's recertification process

I'm hoping to persuade my wife to write up the relevant material, but I wanted to get something out quickly. It if can save one person some hassle ...

Earlier I wrote about: The Personal Care Attendant: things I wish I'd known. We've learned some other things which I'm going to summarize quickly here:

1. The agencies that manage PCA services for the state have to recertify yearly. It turns out some agencies are very bad at doing this. If they fail to recertify on time the best thing that happens is you lose your services instantly -- without warning. The worst thing that happens is you find out 6 months later that the agency didn't recertify. In this case the family may owe the state the money. Lesson: Assume the worst, track the recertification process.
2. The state of Minnesota provides free legal services for disability related work. Isn't that nice to know? This is very valuable in the case of #1.
   

We'll see how this goes. Fortunately we can work with lawyers and we have an excellent state representative, who's office we will engage if we need to.

Years ago I considered retaining a special needs attorney simply as an expert consultant. The attorney I interviewed was excellent, but quite expensive. I suspect I probably should have spent the money, but I'm looking forward to learning what the state funded disability law services are like.