Growing a Tree

"Someone's sitting in the shade today because someone planted a tree a long time ago."


Something happened in my state that has left me reeling – I knew it was the likely outcome but didn’t want to believe that there are so many people in my state who simply cannot see the nuance behind the party line and propaganda. Something dark is going on in our country when money buys elections and the true voice of the people is getting smaller and quieter.

We turn on each other, hurl insults, make accusations. We are a country divided – where once we saw parents, friends, neighbors we now see union thugs, welfare queens, corporate cronies. We see red or blue, right or left. We no longer see a middle ground.

Aside from the above, I want to keep this blog free from my personal politics – not because I’m ashamed or afraid to share them (and I’m sure they’re rather obvious anyway), but because disability advocacy is a rare thing in that it is a completely bipartisan exercise. Well, it’s actually better stated that it’s a nonpartisan exercise.

Disability affects each and every one of us. We all have a loved one, a friend, a neighbor, a classmate, a coworker who could fall into this category. It is also the only minority group than anyone could possibly join at any time, and since all of us are aging, even if we do not become part of the disability community, we will benefit from the service system in place for the elderly and those with disabilities. Whether you bleed red or blue or otherwise, disability issues affect us all.

Indeed, the rights demanded by the disability community all cross over into the so-called typical world. Access to safe and reliable transportation? Access to the workforce, equal pay for equal work? A way of approaching job placement that better pairs workers with jobs? Access to quality health care?

These are all things that are a benefit to everyone in our country.

And since these are long-term goals, a bipartisan approach is absolutely essential. Elected officials come and go. They are members of certain committees during one term, in positions of lesser power the next. Perhaps someone you thought was an enemy because they are a member of the “wrong” party has a child with a disability and would actually like to do more for disability advocacy but needs a nudge in the right direction. Or maybe they support these programs already but hearing about an additional angle only bolsters their support. (A good example of this is an elected official who is passionate about veteran issues – there is a lot of overlap with disability issues.)

Everyone is a potential ally in the disability advocacy movement. It doesn’t matter their party affiliation, their personal politics, or really even their voting record. Everyone needs to hear our voices’ and our children’s voices.

At a time when our country feels bitterly divided, it feels good to advocate for something that is a benefit to all.

Call to Action: Save the Waiver

A call to action for Illinois citizens:

The Illinois legislature recently passed SB 2840, a Medicaid bill that will result in drastic, life-changing consequences for families using the state’s Medically Fragile Technology Dependent waiver.

I truly wish that was an exaggeration, spin to make you sit up and take notice – but it’s not. If the bill continues in its current form, as many as 488 children will take permanent residence in skilled nursing facilities, hospitals or institutions.

The bill would require families on the waiver to pay 5% of their income as a “cost share” for the program, and completely cuts families making more than $95,450 from the program. As a point of reference for you, the average yearly cost for one child on the waiver is $188,210. Families simply cannot afford that kind of care, even if they make “a lot” of money. (even $95,000 a year won’t put a dent in $188,210)

What about private insurance? First, it’s important to know that the vast majority of private insurance companies do not cover the cost of in-home care. Second, the waiver is a payer of last resort. That means it picks up the tab where other insurance leaves off – so even if these families are privately insured, they are still facing an average of $188,210 a year in addition to any private insurance payments/premiums to keep their children from living the rest of their lives in a hospital or a skilled nursing facility.

This is the kind of measure that seems reasonable on paper (and certainly panders to the “I have to pay for MY care, so you should, too” mentality) but in reality, it simply is not. Families whose children qualify for this waiver have been scrimping, saving, and sacrificing since their children were diagnosed. Parents, in many cases, cannot even go to bed at night if there is no night nurse to assist, much less leave the home in order  to contribute financially. This is an incredibly difficult waiver to qualify for, and the families who use it are truly in need of the help it provides. These are children who are literally technology dependent – they have trachs, feeding tubes, and other medical supports. Even if they are also privately insured, there are many expenses not covered by private insurance or Medicaid – costing these families $10,000-30,000 a year just in out of pocket expenses.

Many studies comparing the cost of in-home care to institutional care have proven, time and again, that in-home care is vastly cheaper. It’s not even close – we’re talking tens of thousands of dollars per person per month cheaper to live at home rather than an institution. Yet, institutional care comes at zero additional cost to the family, while those fighting to keep their children at home – where they belong, where it is cheaper for the state – will pay 5% of their income, a price most families on the waiver simply cannot afford.

I am the first to admit that budgets need to be balanced, and states need to be fiscally responsible. This is absolutely not the way to do it.

So, if you’re an Illinois resident, what can you do?

Contact your legislators – and contact them now. The clock is ticking and there is very little time left for the legislature to pass a rider to change this section of the Medicaid bill.

Here is a link to where you can find contact information for your legislators.

What can you do? Call and email. Let them know this is not only costing the state more money but tearing families apart.

State your case, and here’s the ask: a rider bill for the MFTD Waiver portion of SB 2840. There is still time to help these families, but you need to act today.

Make your voice heard!

For more information, please check out the Save the MFTD Waiver website.

Home Visit

Today I had a wonderful experience in political advocacy, and I’m hoping what happened will show how easy it truly is to have an impact.

I invited our state senator to our home to chat about state programs our daughter uses. During the next legislative session, our state will be taking up a new budget and I wanted him to have a “real life” experience with a family who has a child with a disability when he goes to negotiate and vote.

We arranged a time for him to come to our home and it happened to be near the time of one of our Birth to 3 (early intervention) therapies. I let our occupational therapist know ahead of time, and she consented to running an OT session with the senator there.

My senator sat with me in my living room and we just talked. That’s it – just talked. I didn’t have a presentation prepared, I didn’t have a handout. I wanted him to sit in the home of a child with a disability, speak to that child’s mother, see what life looks like. And that’s what we did. We talked while my daughter scooted around the living room, playing with toys, chatting and smiling.

I had a few talking points I wanted to get in. I wanted to talk about the impact Birth to 3 has had on our family and how helpful the Katie Beckett waiver has been. I simply wove those into our conversation. I shared with him our diagnosis story and some of the medical obstacles we faced. He told me about his grandkids. We talked about how bright the future is for my child and some ideas for things that would make things even brighter. He shared with me his personal experience as a senator who was in office as Wisconsin closed institutions and helped people return to the community.

Our OT arrived, and the conversation transitioned to what Birth to 3 looks like for us, what our experience has been like, and what other families have experienced. He spoke with our OT, he asked questions about funding, he asked how it was run. He told me he had never been to a Birth to 3 session before and this was a great way to see what he votes for.

At the end, he thanked me for helping him put a face on the Katie Beckett waiver and said he would remember my daughter whenever issues regarding the waiver arise.

Mission accomplished, I’d say.

But really – it was easy. Senators and representatives want to know their constituents. They want to hear about what life is like for their constituents, they want to know how their vote affects a family, not just a vague demographic.

You don’t need to be deeply knowledgeable on a subject. You don’t need to hold the same political beliefs as your elected representative. You just need a topic of discussion and a willingness to share your personal story.

To set it up, it’s as easy as calling or emailing the official’s office and asking for an appointment. They might be willing to come to your home, or you could ask to meet in their district office or at a local coffeehouse.  They have more flexibility when the legislature is not in session (Wisconsinites, that means you have until January!) and the time between sessions is specifically for the purpose of meeting with constituents.

Think about it. If we want our officials to understand disability, the only way for them to know is for them to see. Consider scheduling a visit with your elected officials as a way to help them understand what life is like for you as a parent, and for your child.

ABLE Act – Take Action

In my last post I encouraged you to test out the advocacy waters by sending a short email to one of your elected officials.

Today I have a specific “ask” for you. (That’s some policy jargon for you – an “ask” is the thing you write about or have a meeting about.)

There is a piece of legislation sitting in Congress right now. It has bipartisan support in both the House and the Senate. It needs our voices – parents, grandparents, friends, self-advocates – to get going. Today, April 25, has been designated as National ABLE Act Call-In Day.

The “Achieving a Better Life Experience” (ABLE) act would allow individuals with disabilities to have a savings account that can be used toward living expenses, education, medical expenses, assistive technology, job training, and other supports.

The best thing about this act? The money in this account does not count against the individual’s cash asset limits if he or she is drawing Social Security Disability Income or receiving Medicaid.

This is absolutely revolutionary.

For decades, individuals with disabilities – capable of working, wanting to work – have been forced below the poverty line due to stringent rules regulating SSDI and Medicaid. The cash asset limit in place to continue participating in these programs is an absolute joke, and essentially prevents individuals with disabilities who require Medicaid for health insurance from obtaining meaningful work for meaningful pay. Individuals whose disabilities make it difficult to work a standard 40 hour work week instead must live off SSDI, which is a poverty-level amount.

This act would make it possible for families of individuals with disabilities, and the individuals themselves, to save money in this special account so that they can live a more meaningful life of their choosing. These accounts are meant to supplement SSDI while still keeping the person eligible for Medicaid.

Here are a few more benefits of the bill:

  • will be regulated at the federal level so these accounts can cross state lines without problem
  • can be held in the individual’s name or in a parent’s name
  • money can be used at any point in the individual’s life – does not need to wait until adulthood
  • if a family has already been saving money in a traditional savings account, money can be rolled over without penalty

If you’re interested in taking action, there are a few things you can do.

First, check to see if your Representative and Senators are already sponsors of the bill. If they are, send them an email or call them to thank them for their support. (Links to finding your elected officials can be found in the sidebar of this blog.)

If they aren’t sponsors, send an email or give them a call. You may feel like your rep is too busy to talk to you or read your email. Rest assured that staffers are important players in this, and a conversation with a staffer is still a step in the right direction. Also, each office counts the number of “contacts” they get for or against a bill – so your voice will still be heard! If you need help wording your email or conversation, check out these talking points from the National Down Syndrome Society.

Other ideas:

  • If you like to tweet, disability advocates across the country are using the hashtag: #passtheABLEact
  • If you are a blogger, consider posting something about the act and rallying others to action.
  • If you like to use Facebook, consider posting something about the act.
  • If you are part of a parent group, support group, or other disability-related organization – send them the info.

There are a lot of different ways you can let Congress know you support this bill. Ready to take some action?

Baby Steps

Are you interested in legislative advocacy but not sure how to do it? Or worried you don’t have the time? There are many things you can do right from home that make a tremendous impact.

Legislators have a difficult job – one I would never want. Ever. They are asked to make huge decisions on issues they may only understand at the most basic level. Not because they don’t care, but because there just isn’t enough time in the day to become a leading expert on all the topics that come across their desks. They have staff to help, but this is a way families can play a meaningful role in advocacy.

You may have a legislator who has never even met a person with a disability, much less one who has a meaningful understanding of the joys of living this life. When a piece of legislation crosses his path that greatly affects people with disabilities, he may have no idea how or why.

Legislators want to hear from constituents. They get to hear from businesses and lobbyists, but the voice of their constituents is even more important. After all, you vote and businesses don’t.

Anyways, here’s your first baby step:

Send an email.

That’s it. Just send an email. It can be an email introducing yourself and your family as constituents. It can be an email thanking them for a vote on a certain piece of legislation. It can be an email asking about their position on a certain issue, or asking for support on a certain issue.

It can be short and sweet, doesn’t need to involve a lot of policy jargon or technicalities. Write from the heart.

If you’re emailing a state official, it’s likely you’ll even get a personal response. And there it is – a seed planted.

I’ve had what I consider to be success in emailing my legislators. I don’t always agree with their politics, but one of the most powerful aspects of the disability movement is that it’s really a non-partisan movement. (more on that later) It doesn’t have to be about party politics – it’s about doing what is right for people with disabilities.

Good luck!


In my last post, I talked about inclusion, and some of the things I said are very tall orders. There’s something I want to add to that conversation because I think there is a little nuance missing.

Inclusion can be the default position of workplaces and schools, but there still needs to be room for people who choose a different path. For some children, the classroom itself (lights, sounds, movements, etc) is a trigger. For some, full inclusion is not the answer.

What I advocate for is for all children to start in a place of inclusion and provide options for parents when inclusion is not the right choice. Design schools and curriculum around inclusion so the noggin-scratcher isn’t “how does this child fit in?” but “how do we best serve a student for whom full inclusion is not the best option?”

If that becomes the thing to consider, the thing the IEP team has to sit down and really mull over, the hope would be that pull-outs, sensory breaks, and other activities would be done mindfully and with the student’s best interests at heart – not the defaults that all kids with certain disabilities have written into their plans.

Same goes for the workplace. I am in no way advocating for the immediate closure of sheltered workshops. For some, the workshop is a safe place that they like.

I advocate for the default of graduating high school students to try job placement in a meaningful job with real pay. Try it, see what works, what doesn’t. Expect that people can do this instead of the current default – “there’s workshops for people like that.”

I wanted to add to my inclusion discussion because I understand the nuances with each individual, and I would never advocate for an individual to be forced into a situation that makes them scared, angry, or frustrated. I advocate for avoiding the attitude of “oh there’s a special classroom for all kids like that.”


Inclusion is an incredibly touchy subject, and everyone has a unique opinion. It is probably one of the most contested subjects in the world of disability rights.

I’m going to put a stake in the ground here and now. I think it is in the best interests of individuals with disabilities to have full inclusion. There is no such thing as part-time inclusion – either you’re included or you’re not.

I strongly feel it is a failure of imagination (though not intentional or vicious) that leads to pull outs, self-contained classrooms, and other barriers to full inclusion. I also firmly believe that sometimes parents are their children’s worst enemies when they say their child “cannot” be included due to the severity of the diagnosis.

What I propose is hard. I know it. I am married to a high school teacher with 120 students on his case load. He and I have talked at length about what this might look like. I am also a former teacher and have some familiarity with what I suggest here.

But what I propose is not impossible. It’s just going to take some revolutionary thinking on the part of parents, teachers, and administrators.

So what might full inclusion look like?

  • no more waiting for people to be “ready” to do things and choosing arbitrary skills to determine that readiness
  • no more forcing functional skills that have no lasting impact in the long run (example: demanding a child learn to walk instead of achieving mobility with a wheelchair)
  • not being satisfied with inclusion only during art, physical education, and lunch
  • no longer referring to students as “special ed students,” “SPED kids,” “CD students,” etc – names work just fine, these labels serve to separate students
  • high expectations of ALL students, no matter how many services they receive
  • no more “reverse mainstreaming” (children visiting special education classrooms to serve as role models)
  • encouraging peer-to-peer support wherever and whenever possible (including opportunities for students with disabilities to help those without disabilities)
  • all students attend their own IEP meetings
  • aides help teachers and all classroom students instead of hovering around just one student
  • teachers and students have the latitude to fail, and the ability to work together to come up with better solutions

Right now, it is acceptable for children to leave the classroom for all sorts of services and supports. Why is physical therapy done in a pull-out? Why can’t it be done during PE? Why can’t a teacher read test questions aloud for all students to hear instead of making a student go to the special ed room for the aide to read the test? Or if silence is required, why can’t the student remain in class and listen to a recording of the questions through a set of headphones? Why can’t a fellow student open a carton of milk at lunch time instead of the aide hovering around and doing it?

As I said, this is no small task.

If we want a future where people with disabilities have equal opportunity, change needs to start in our schools.

Simple Question

I recently had the pleasure of hearing Kathie Snow speak.

She asked a simple question: on your deathbed, will you look back and think “I’m so glad I could walk” or “I’m so glad I had appropriate behaviors”?

I think the vast majority of us would not think about that, but would think about the people we loved, the places we had been, the things we had accomplished.

But yet this is the life to which we condemn people with disabilities – a life where “I’m so glad I had appropriate behaviors” is the extent of accomplishment. We push therapies, sheltered workshops, group homes – we demand they conform to a set standard of ability and behavior before allowing them into the world to attend school or work.

We need to ask this question: what would this person be doing if they did not have a disability?

We need to ask, and then we really need to listen to the answer. People with disabilities give us the answer all the time. They are telling us and showing us. That answer should be what drives our advocacy, and drives us to remodel the service system so that it allows people to create lives.

What can we do to listen better? What can we do to allow for authentic life experiences for those with disabilities? How do we stop doing for, and start helping others create lives?

Killer Concepts

In the world of disability, there are three concepts that throw some major roadblocks in the way of people with disabilities.

Ready. Realistic. Never.

As the mother of a young child, I hear “ready” the most. My daughter is in therapy so she can be “ready” to access the world. When she turns three, she will go to school (while her typical peers stay home or attend daycare/preschool) so that she can be “ready” to go to kindergarten. She’ll start kindergarten at age 5 only if she is  “ready,” otherwise she has to stay in special education preschool another year.

So on, and so forth.

From birth, this concept of ready has sort of stuck in my craw, though I have never been able to articulate why until now: ready for what? No one is ready for school until they actually go and learn how to be a student. Kindergarteners come to school with all levels of ability – some can read, others have never cracked open a book. Some don’t even speak English.

Yet my child is held to some standard of “ready” in order to cross the threshold into a typical kindergarten classroom. My child will be held to behavioral and academic standards to which no other child will be held, all  because of the circumstances of her birth – she has an extra chromosome.

We do the same thing to adults trying to enter the workforce. They are required to be “ready,” and are held to high behavioral and productivity standards. They stay in high school longer so that they will be “ready” when they graduate at 21.

Think back to your first job: were you actually ready on that first day? Likely not. Even with a college degree or apprenticeship, that first day of work is nerve-wracking. Even if you have been in your field for years, switching to a new environment involves learning new procedures, new coworkers.

I recently heard someone speak who made the argument that when a person with a disability does not do well at a job, the problem is likely a bad job match, not that the individual wasn’t ready to work. I am inclined to agree with that statement.

Realistic is another killer concept, though this is not unique to individuals with disabilities. People are quick to tell others that their dreams are unrealistic. Want to be an actress? Oh honey, that’s not realistic. I’m willing to bet you have heard that yourself at some point in your life.

The problem with realistic for people with disabilities is that it is often applied to situations that are anything but unrealistic. People see the disability, and instead of rising to the challenge of “how can we make this work” they say “it’s unrealistic.”

Just like with any other individual, our role is not to decide someone’s goal is unrealistic, but to help figure out a way to achieve that dream. It may take a bit of imagination, and a willingness to not judge what achievement looks like. In fact, I think this is a huge obstacle for many parents (including myself). There is a tendency to go to absolutes – if my kid wants to be a nurse but does not have the academic skills to achieve that goal, then setting up procedure trays in the ER is just a token job. Looked at another way, setting up trays could be the fulfillment of that dream. This person gets to wear “the uniform” (scrubs), spend time with nurses and doctors, interact with patients, and work in a medical setting – all things that may attract that person to the medical field in the first place.

We have to be willing to see the dream from many different angles.

And last, never is an obvious one. How many dreams are squashed with a simple “never going to happen”?

Isn’t it widely accepted that failure is an excellent way of learning? Why do we deny people with disabilities the essential right to fail? I fail all the time – at work, as a wife, as a mother, as a friend. I also succeed. But those successes are the product of the lessons learned by previous failures.

We need to allow for the possibility of failure.

So here’s the challenge: how will you remove the concepts of ready, realistic, and never from your life and advocacy?


What to Do?

So now that I’ve dipped my toes into advocacy, I’m seeing some things that shouldn’t surprise me but they do.

What to do with parents of children with disabilities who don’t believe, don’t care, or are too afraid to believe?

Last spring, my husband and I attended a town hall meeting with our state legislators in regard to the state budget. There were major cuts to programs that are important to people with disabilities (for instance, city buses to get to and from work) as well as an almost $1 billion dollar cut to public education. We testified how the cuts would affect our daughter specifically.

Another mom testified about her child. This child also has a disability. She said the state was spending too much money on his education, on his transportation, on his health care. She claimed to be the first parent to ever sue the state for the right to place her child in an institution to “save the state money.” She won, and her child currently lives in an institution.

Now, as a mother to a child with a disability, I’d like to believe that there is so much more at play in her story than she let on. I would like to believe that she was afraid, that she felt unsupported, that she was at her wit’s end. I would like to believe that the financial component of her story is really just a cover. (Actually, I really hope it’s a cover because there are virtually no scenarios in which paying for someone to live in an institution is cheaper than in-home care and support. I’d hate to think there is a child in an institution based solely on some bad math.)

This is an extreme example, but there are other, more insidious examples that I encounter more often than I’d like to.

It’s the mom who says “My kid will never…” and the dad who tells me “You’re naive to think…” It’s the person who told me that my generation “doesn’t have to fight” for anything anymore because my child wasn’t put in an institution. Well, there’s a standard for you. “Not in an institution.”  (Calmly walking away from that particular conversation was an exercise in extreme willpower.) The people raising the next generation of individuals with disabilities are throwing up the very roadblocks that anger and frustrate them.

How do I write a legislator asking for a change in policy when there is another mom saying it isn’t necessary or that it’s too costly? How do I ask for fully inclusive education when there is a dad demanding a specialized school for his child’s diagnosis?

What do I say to someone who says there are no more fights when I’m staring down a system that patronizes people with disabilities by “doing for” instead of supporting, breaks the law by segregating kids in special education, and creates dependency on the system with stringent Medicaid laws and sub-minimum wages? (Yes, it is legal to pay a personal in a sheltered workshop sub-minimum wage – we are talking literally pennies a day here.)

Where do you strike the balance between respecting everyone’s viewpoint, making sure all voices are heard, and still creating positive, meaningful change for all?

Post Navigation