The Other Families

With my special ed kid in high school, I started attending evening lectures and seminars about what to do when he turns 18. We’re not quite sure what supports that Ian will need as he gets older, so I am preparing for the worst case situation and the best case situation.

The worst case scenario is that he can never manage the real world on his own and will need full support for everything from work to food to housing. The best case scenario is that he can use his computer skills to find a proper job where they won’t mind his oddities, and he can live independently enough that he will only need light oversight from a family member.

Last week, I went to one talk where a social worker for the county gave us an overview of all the tasks that a special ed parent must do before the child turns 18, and then how they would have to manage the health, food, housing, transportation, employment, and social needs for their child. I knew some of those things already, but this was the first time that I got the broad overview.

It was horrific.

Until your child is 21, the school district is largely in charge of people with special needs. Not only do they have to provide the child with an education, but they also provide counseling, physical therapy, social groups, and transportation. They don’t necessarily provide health care, but in the special ed school that I taught at it in the Bronx many years ago, they wheeled in kids in wheelchairs who were semi-comatose and supervised them for the day. By law, they must care for all children until they turn 21.

Special ed parents talk about what happens when their child turns 21 as “falling off the cliff.” Services stop.

The woman from the county explained that parents had to manage all those aspects of their child’s life on their own. Yes, there were different bureaucracies with different pots of money that could help you, but the money was small and each bureaucracy had its own paperwork and quirks. It became very clear at this presentation that some parents, specifically the mothers, now had a full time job managing their child’s life.

It is a full time job just filling out the paperwork. And the quality of services is terrible. Yes, they’ll give your kid a lift to his job at the supermarket pushing shopping carts for less than minimum wage, but it takes 45 minutes for the van to arrive. At some point, the state will provide your child with housing, but there is a ten year waiting list for an apartment.

The woman explained that parents had to spend $5,000 on a lawyer to create a special needs trust and to get guardianship over the child-adult, which is necessary to pay their bills and to make medical decisions. She briefly mentioned that the difference between getting power of attorney versus the guardianship option, but told us to consult with a lawyer about these matters.

At one point during the talk, my face got all red as I realized the scope of work ahead of me, if we face the worst case scenario. I think I burst out with “THIS IS INSANE!” in the middle of her presentation.

How can anybody with a family with special needs ever vote for a Republican? I can’t understand how anybody would vote against their family’s needs in this way. We have no safety net in this country.

If some cells divide incorrectly in utero, you have spend the rest of your life out of the workforce, and instead your days become about managing paperwork just to get your child-adult out of the basement. A couple of wonky cell divisions means a substantially poorer family income and a lifetime of working your way through phone trees to find the right dispirited bureaucrat who will okay your transportation voucher.

If I knew all this twenty years ago, I might not have decided to be a parent. I probably would have anyway, because my kids bring me so much joy, but if I knew all this, I would have certainly paused and reflected on the risks.

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18 thoughts on “The Other Families

  1. How can a family without special needs vote Republican knowing that everyone needs/deserves a social safety net to varying degrees? Someone else mentioned in a comment to a recent post that it’s a moral issue. I agree – what else are we here for but to live good, healthy lives?

    A different swirl of the DNA soup and I’m in your boat. A different skin colour or other demographic circumstance and I’m with a lot less unearned privilege.

    My life is better if “you” are have access to healthcare and education and affordable housing and a living wage. We all win.

  2. I hope you have someone in your real life who will hold your hands and look you in the eyes and remind you of what an amazing mom and advocate you have been for both of your children.

    I am more directly personal in my need for a safety net even if I don’t need it, not just for the alternate world in which I need it, but because I cannot personally take the distress. My life is more bearable if there is less distress in the world and that is worth a fair amount of my money.

    1. I agree with bj on both counts – you have done a great, thankless job as advocate, and I personally (for selfish mental health reasons) want a better safety net even if I don’t need it myself. It’s back to Rawls: what would justice look like if you could formulate the concept before knowing what situation you’d find yourself in?

      If you can keep writing about this situation, which you do so well, that may help change things. It’s invisible to many people until they have a friend or family member caught up in it. The families caught up in these situations need people who can articulate clearly what is going on and get the word out.

      (Related to this, there was an article recently in the NYT by a parent who was concerned about long-term care for her child, though the focus was on what happened after she and her husband died and whether her other children were “compassionate” enough to take on care of their sibling. I thought that part was a big mistake, and indicated the pitfalls of discussing your personal situation in public with your name attached. But it was good to see these issues raised in a major newspaper.)

      1. Rawls set up a very compelling thought experiment. It’s not at all clear to me that the results are as he thinks: if you are thinking ‘how does my life work best if I am the most unfortunate?’ perhaps they skew in the directions favored by the Proggies. That is, California (where I am at this moment). But if you think ‘how does life work best for the largest number of people in the society, with incentives for people to be all they can be?’ maybe it is more like Texas.

      2. For me, being an immigrant laborer, doing lawn work for tech billionaires in Atherton, is about the worst life I can imagine. (In America, that is, obviously it would be worse in North Korea.) I would never choose a place with such income inequaity if I didn’t know where I was going to rank on the income scale.

        Mind you, Rawls had a much more far-reaching conception of the veil of ignorance, in which you are not supposed to know your tastes or values (e.g., whether you care more about creature comfort or respect). I have no idea of where I would want to live if I had no tastes or values.

      3. dave s. said,

        “But if you think ‘how does life work best for the largest number of people in the society, with incentives for people to be all they can be?’ maybe it is more like Texas.”

        Apologies for not having read the whole thread, but you can kind of see what people’s values are by looking at a moving map:

        https://www.northamerican.com/migration-map

        It’s worth the click, but basically, people are migrating to the SE, TX, Oregon, Idaho, Colorado and Arizona, moving out of WA, CA, Minnesota, Michigan, Illinois, MD, and a big block of NE states (including NY and NJ)–the remaining states are at equilibrium–a lot of flyover states and the tip of the NE.

        I’m surprised/not surprised as a native Washingtonian to see that people are leaving. I keep bumping into fellow Washingtonians living in TX, and when I asked my family in WA about it, they said a) high cost of living and b) a hollowing out of the middle class, with more rich and more poor. (My family didn’t use the term, but social equality has taken a beating in WA the last 20 years–a pretty big deal in WA, as Scandi culture favors social equality.) I also see that my old high school in WA is now a 1 on Great Schools. It was never much to write home about, but it’s absolutely wretched now.

        People are voting with their feet.

        With regard to special needs–you might get better services for your special needs kid in NY or NJ, but if you were a middle-income person, what kind of quality of life would you get otherwise for yourself and your other kids?

        A kid would have to be VERY disabled before the whole family living in some sort of miserable NE slum shoebox would look better than moving to a cheaper state, having a nicer home, living in a nicer neighborhood, and paying cash for therapy. (Of course, you need to be genuinely middle income to make that work.) And then there’s the question–could you actually afford to live in the areas of NY and NJ with good special education?

      4. Also, your groceries will be cheaper. I was looking at an online calculator, and they thought Dallas groceries were 30% cheaper than in Jersey City.

        Also:

        http://www.nj.com/inside-jersey/index.ssf/2015/03/the_high_cost_of_jersey_why_we_go.html

        “The worst state for property taxes? Yes, it’s New Jersey, according to the Tax Foundation. The 2013 finding (the latest available) also indicates New Jersey comes in dead last in the group’s ranking of state business climates. The state also ranks second for highest state and local income tax burdens as a percentage of income, and 24th for state and local sales tax rates.”

        “Many states have followed the federal government’s lead and increased how much an estate has to be worth before it’s taxed. But not New Jersey. If your assets, including your home, bank and investment accounts, total more than $675,000 when you die, the state will take a fat chunk, even if you don’t owe estate taxes on the federal side. Compare that to Florida, Pennsylvania and North Carolina, which have no estate tax, and you can see why New Jersey is a very expensive place to die.”

        !!!

        “The average property value in New Jersey is $344,499.66, according to the Rutgers Data Book, an online database provided by the Rutgers Center for Government Services. And the average cost of property taxes in the state was $8,161 in 2014, according to data from the Department of Community Affairs.”

        “A 2014 report by the National Low Income Housing Coalition, a public policy and advocacy group for affordable housing, ranked New Jersey as the fifth most expensive state for renters. It found a family must earn $51,838 a year to afford an average, two-bedroom apartment, costing $1,296 a month.”

        Ooooooh!

        “New Jersey has the second highest percentage of households that earn more than $150,000 per year, with 18 percent of the state earning that much, according to a 2014 report by the online research firm FindTheBest.com.”

        But if you don’t make that much–bummer.

        “New Jersey workers have the longest commute of anyone in the nation.”

        “New Jersey pays the sixth highest amount in the United States for nursing home care, according to a 2014 study sponsored by AARP, nonprofit research foundation the Commonwealth Fund and the SCAN Foundation, a nonprofit organization that advocates for older adults and care issues. A recent survey by financial services firm Genworth found the average cost of nursing home care for a semi-private room was $109,500 per year in New Jersey, compared to the U.S. average of $77,380.”

        “The state scored well for its low crime rate (eighth lowest in the nation), but lost points for its high tax burden (second highest) and cost of living (fifth highest). And 52 percent of New Jerseyans plan to leave the state when they retire…”

        “With debt per capita at $7,857, the state ranks as the fifth highest, according to the study. The same review showed that New Jersey is the eighth worst-run state in the country, in part because of falling credit ratings and the 10th highest unemployment rate in the nation.”

      5. I’m not clear on what your graph on state/state migration is calculating, but it doesn’t tell you “where people chose to move.” I think this might be at least partially because it only considers domestic migration, and ignores population influxes from around the world & population growth. The top 4 states in population growth in 2016-2017 are TX, FL, CA, and WA, with WA’s 3.5% increase in population being more than double Texas 1.6%.

        And, Oregon seems to be doing pretty well, given it’s fairly high tax rate (maybe that keeps out the rich people).

  3. I’m sorry you have to go through all that. That’s got to be rough. I know my cousin has something set up for his daughter where she has supervised living, but her own apartment, and a job. They’re in California and it may be easier there.

  4. living in some sort of miserable NE slum shoebox would look better than moving to a cheaper state, having a nicer home, living in a nicer neighborhood, and paying cash for therapy.

    It all depends on your income. For certain skills, nothing beats location, location, location. And older relatives need care, too.

    The Tax Foundation’s maps are interesting, but it’s the total tax burden that matters. I looked into it about 5 years ago; while some states had lower income taxes, they often made up for it in property taxes or sales taxes. I’m sure the recent tax reform package has changed that. The loss of the SALT deduction may push retirees out of high tax states, particularly those that tax income from investments rather than earned income.

    There’s also the question as to whether you can even find therapists and caretakers.

    1. Looking at Trulia’s heat maps, most of the United States is green (affordable), with only a few hot spots. https://www.trulia.com/home_prices/

      Of course, the stories about those hot spots are front and center on the internet. The entire country doesn’t have to live in downtown Manhattan or Silicon Valley, though.

    2. Cranberry said,

      “It all depends on your income. For certain skills, nothing beats location, location, location.”

      Yeah. I’m talking about middle income people, who may find themselves substantially better off elsewhere.

      For example, it always blows my mind when Laura talks as though nurses are poor people. In much of the country, nurses are near the top of the heap among working women.

      1. In terms of services, I have heard from people who know that the state services for mental health and cancer care are better than what middle class families can afford–or even find. But it’s need-based.

        You’re only middle income if you can find a job. There can be different requirements in different states. For example, New Jersey does not have reciprocity agreements with other states for plumbers and gas pipe fitters. https://www.nccer.org/workforce-development-programs/reciprocity-map Whereas apparently nurses are able to have their nursing licenses recognized in any state.

  5. Like Laura, I remember the exact moment I realized that post graduation, most of us autism moms essentially end up running a group home for one, at least for a while (a while being probably at least a decade). It was a sobering moment.

    What helped reframe things for me was realizing we didn’t have to do everything at once. Putting our affairs in order (or perhaps more accurately for us, updating our affairs) and applying for SSI were obvious priorities. But we didn’t need to switch doctors right away, or think about where Son was eventually going to live.(His Transition teacher once asked him where he thought he’d live when he was an adult. “In my house.” “What about your parents?” “They’ll be in the old age home.” So apparently he already has a plan.)

    I also remind myself that plenty of typical kids can take most of their twenties to launch. There isn’t a deadline.

    It does make a huge difference that we live where we do. States vary wildly in what services are available and how they define eligibility. In our state, Ohio, our son has a Medicaid Waiver that pays for a variety of services but he might not if we lived elsewhere; I know that in Massachusetts for example, if you are autistic but have at least an average IQ, you are out of luck. You must also have ID (intellectual disability, the condition formerly known as mental retardation) to get a Waiver.

    There is a family in our neighborhood with two autistic young adult sons, who were job transferred here from Texas when the boys were elementary-school aged. The mom is still remarking, “There are so many services here, there is nothing in Texas.” (Sorry Amy). I think she is a little pissed at what they missed out on during their early years.

    Our school district has a post-high school work-study transition program that wasn’t a great fit for Son but was good enough. He went for a year and a half before taking his diploma, and that felt like it bought us a little time to get our sea legs for adulthood.

    Son started taking a class or two a semester at the community college during that time, and he is continuing to do so — but please know that we are giving him a lot of academic support. It’s not clear to me he will finish a degree but for now he is very committed to the idea of being a college student, and it is hard to be against that.

    Meanwhile, he is participating in job development programs at two different nonprofits, and about to start a weekly social program at a third. And if those don’t work out, there are other options — because we live where we live.

    I don’t expect everything he is doing “to stick.” I remember how many different interventions and activities we went through when we were just starting out in his toddlerhood before we found the right ones for him.

    My immediate goal is that Son be productively engaged most days of the week. My long term hope is that these various experiments lead to Son finding his niche and his place. And because we live where we do, I am reasonably certain that some sort of supervised living situation will eventually be made available to him. Then we can sell this suburban house and downsize back into town.

    1. Thanks, blueashmom, for this update. I’m glad that things are working out well for you. Hope we’re in a good place, too, in a few years.

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