What Would YOU Like to Know About SSI?

So many important and unfamiliar events happen when our kids with disabilities turn 18 years old! One of these that confuses many of us, present company included, is the application for SSI, Supplemental Security Insurance. It's uncharted territory for most of us.

Wouldn't it be great if we had a guide to sort out some of our many questions? Thankfully, Molly Clarke of Social Security Disability Help has agreed to provide answers to some commonly asked questions that leave us scratching our heads.

What questions would you like Molly to address in a post? I'm collecting your questions in the Comments section below to pass along for her expert response. Please add your questions to the Comment section to let her know what burning questions YOU have!

Then, stay tuned for Molly's answers...they are sure to be a big help!

Photo credit:  The Survival Woman at Flickr Creative Commons

Special Needs Children and Social Security Disability Benefits

Photo courtesy of SalFalko, Creative Commons
Do you have questions about whether or not your child might be eligible for Social Security Disability benefits? Many families do. Today we have an excellent guest post by Molly Clarke of Social Security Disability Help written with your questions in mind. Please give Molly a big welcome!

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Children labeled as having “special needs” can vary dramatically when it comes to their symptoms and limitations. Some children have mild learning impairments while others have terminal illnesses. No matter the severity of your child’s condition, a disability or health condition is certain to impact the entire family.


Parents of children with special needs often dedicate a significant amount of time and effort to keeping their child happy and healthy. In order to fully support a child with special needs, parents may find that they need to reduce their professional workload or even leave work all together.  The resulting loss of income and lack of medical insurance can cause serious financial distress.


If your child has a serious health condition or disability he or she may qualify for Social Security Disability (SSD) benefits. As a parent or guardian, you can use these payments to provide and care for your child’s individual needs.


Supplemental Security Income

The Social Security Administration (SSA) provides disability benefits through two programs. The first program—SocialSecurity Disability Insurance (SSDI)—is commonly associated with disabled adults. This is because eligibility for SSDI is determined by the amount of taxes an individual has paid into the system. For obvious reasons, children don’t typically qualify for this type of assistance.


The second disability benefit program is called Supplemental Security Income (SSI). SSI offers financial assistance to disabled and elderly individuals who have very little income.This program does not have age or work-related requirements in order to qualify. Instead, applicants cannot exceed certain financial limits set forth by the SSA.


In the case of a child, a portion of the parent or guardian’s finances will be taken into consideration. This is called “deeming”. The SSA uses deeming when a child is under the age of 18, is unmarried, and lives at home with his or her parents—who aren’t SSI recipients. The SSA will no longer deem the parents’ income if one or more of these factors changes.


Parents’ earned income, unearned income, and financial resources will all be deemed. If the child lives with a step-parent or adoptive parent, their income will count as well. Listed below are the sources of income that are not included in the deeming process:


·        Welfare or Public Income Maintenance (Including Temporary Assistance to Needy Families and VA Pension for veterans.

·         Foster care payments

·         Food Stamps

·         Disaster assistance

·         Tax refunds on real property

·         Home grown produce (used for personal consumption)


In addition to the previously mentioned types of income, the SSA will also make allocations for living expenses. In 2013, the allocation for a non-disabled child who does not earn any income is $356 per month. This means that for each ineligible child that lives in the same household, the SSA will deduct $356 from a parent’s deemed income.


The SSA also includes a parental living allowance. The amount for one parent is $710 per month. The amount for two parents is $1,066 per month. This allowance will also be subtracted from the amount of income deemed to a disabled child. It is important to note that this amount will not be subtracted for parents who already receive public assistance.


Once your child turns 18, deeming will stop and his or her own income will be used to determine eligibility for SSI.


Definition of Disability

In addition to meeting the technical and financial requirements mentioned above, your child must also meet the SSA’s definition of disability to qualify for SSD benefits. This includes meeting the following criteria:


·         Your child cannot be employed at any job that is considered to be substantial work.

·         Your child has a mental or physical condition that significantly limits his or her ability to function and complete typical daily activities.

·         Your child’s condition has lasted—or is expected to last—at least one year or otherwise result in death.


Blue Book and Compassionate Allowance Listings


While the SSA requires that children meet their basic definition of disability, they also require that your child’s condition match an impairment listing within the blue book. The blue book is the SSA’s official manual of disabling conditions and symptoms. It is important to remember that the SSA has separate listings for children and adults. Access specific listings and medical criteria, here: http://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm


The SSA recognizes that, due to the severity of some conditions, applicants cannot be expected to wait the standard processing times to receive disability benefits. For this reason, they began the Compassionate Allowances (CAL) program. The CAL program allows individuals with severely debilitating or terminal illnesses to qualify for benefits in as little as ten days. Please note that you do not have to fill out additional paperwork to qualify for CAL processing. The SSA will evaluate your child’s claim to determine whether or not he or she qualifies and will expedite your claim accordingly.  You can access a list of CAL conditions, here: http://www.disability-benefits-help.org/compassionate-allowances.


Social Security Disability Application Process

The SSD application process is slightly different for a children and adults.  As the parent or guardian, you will be required to complete two forms as part of the initial application. These forms include the “Application for Supplemental Security Income” and the “Child Disability Report”.  Currently, only the Child Disability Report can be completed online. You will have to schedule an appointment with your local Social Security office to complete the SSI application.


Before beginning the application process, it is vital that you collect the necessary medical records and documentation. The SSA will evaluate this documentation to determine the severity of your child’s condition. Medical documentation should include records of your child’s diagnosis, lab results, summaries of treatments, and any other relevant medical evidence. You should also include official statements from teachers, coaches, and physicians that interact with your child on a daily basis and can attest to his or her limitations.  You should also have access tofinancial statements when you begin the application procedures.


It is important that you understand that the application for SSD benefits will not be easy. The SSA processes many new applications each day and unfortunately rejects a good amount of them. It is important that you are persistent—particularly if your child’s initial application is denied. You have the right to appeal this decision.


Once you are awarded benefits you will be able to focus on the well-being of your child rather than your own financial distress.


For more information about SSD benefits, visit Social Security Disability Help or contact Molly Clarke at mac@ssd-help.org.

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Please also take a look at the Social Security Disability Help website, which is an amazing resource. Be sure to bookmark it for the future even if your child is not currently eligible for Social Security disability benefits. When the time comes for you to apply on your child's behalf, you'll want this information handy!

AAC and Rett Syndome

Those of you who may not yet know of Carole Zangari's AMAZING blog, PrAACtical AAC, you are in for a fantastic treat. For any parent or teacher supporting a non-verbal child, Carole's blog is such a wealth of information!!! She has so much information there, it will take months for you to go through all of it.

Today, PrAACtical AAC is featuring an excellent guest post by Dr. Theresa Bartalotta. In this post, Dr. Bartalotta gives a concise, helpful overview of Rett syndrome and ways to support communication in children and adults with the disorder.

I appreciate how Dr. Bartalotta addresses the challenges our kids with Rett face as they relate to communication:
  • physical limitations
  • response time
  • non-standard communications that can become highly meaningful
She also talks about particular AAC interventions that can be useful, including techniques, partner training, and low- and high-tech solutions that have been shown to be successful with some kids with Rett syndrome.

Those of you who know me well know that I take exception to the description of the Rett syndrome that assumes "most individuals are severely cognitively challenged" because we simply don't possess the tools to measure that. If you can't prove it, you can't presume it, right? Better to give the benefit of the doubt and provide rich opportunities, letting kids bloom to the greatest of their potential. That's my soapbox and I'm not stepping off, sorry.

For an introductory article on AAC and Rett syndrome, Dr. Bartalotta covers a lot of ground! If your child has Rett syndrome, it's worth passing on to your child's speech therapist.

Then, once you do that, go back and browse the PrAACtical AAC site. You'll be glad you did! Seriously, go check it out!

Resilience as a Way of Life

If living with disability teaches a family anything, it teaches us resilience. We can handle more than we think we can.
Photo by Healingdream
I‘ve been thinking a lot about family resilience lately. Maybe that’s because our family is getting a chance to flex those muscles of resiliency hard. It was good catharsis for me to write down all the things we’re dealing with right now, but I erased them because my words sounded whiney. The point is, we’re being pulled from many sides.

All of us are being pulled. Much of the time.

There is no point in letting it get us down. We are stronger than we think.

This week I took part in a support group for parents of kids suffering with a particular illness. It was lovely to meet other parents and hear their stories. We were all at different places in our journeys, but the current that carried the words around our table was one of resilience. These families tackled the challenges and kept their eyes fixed on the goal line. That’s something parents learn to do, and the more practice we have at doing this, the more familiar and comfortable it becomes.

I won’t say that it becomes easier, because that isn’t always true. Sometimes resilience is a difficult response that takes focused effort. But with practice, it comes more naturally.

I hear similar stories of stress and resilient responses in my disabilities circles. Life dishes out messy circumstances sometimes, ones that can get us down. It’s okay to cry for a time, especially early in a diagnosis when our hurt is raw, but then we need to pull on our rubber boots and wade through the muck. And we do, one step right after another. Eventually, we get out of the sloppy mud.

There is a lot we can do to draw strength during stressful times.

·         We pray. Hard. Faith often grows when we are stressed.

·         We make time to connect with our spouses. It might just be brushing our teeth together as we switch shifts, but we savor that time.

·         We take solace in our routine chores. After all, everyone needs clean clothes even if one of the kids is in the hospital. And the goats still need to be fed…just ask them.

·         We help someone else going through a rough time. The strength you can draw from this one never fails to amaze me, but I see it often. Parents who are working hard to keep their own brood in a sane place will offer encouragement or advice. That very act gives them energy to keep going. It is true for me.

·         We let go of the optional. We may have to post to our blogs less often (do you feel an apology hidden there?). We may have to back out of the carpool for a time or let someone else teach Sunday School.

·         Pet peeves are optional. Learn to let them go or see them differently. Kitty prints in the dust on the mantel normally send me to grab the duster. Right now, during a time that demands resilience, I look at them as evidence that the cat is alive. This makes them a good sign, right?

·         If you can’t set aside time to enjoy your hobbies (do I hear you belly laughing about now?), see if there is some way to build them into your temporary routine. I love to tat (that Victorian art of making lace with shuttles) and find it’s something I can do in the car while my husband drives us to the hospital. Well, that was before I injured my hand, but I digress… Above all, try to find things within your busyness that make you smile. Or even laugh.
·         We ask for help. If anyone knows how to do this, please share. I’m lousy at this one, but have heard it helps.

You are an expert at resilience. Would you share with us what helps you stay strong when the pressure is on?

PowerPoint Series Up and Running (Again)

If you haven't checked out the series here on using PowerPoint for meeting Assistive Technology needs, I encourage you to check it out. All the posts in the topic can be found through the "PPTs for AT" tab in the center of the top bar. You'll find so much information that your head will spin.

Thank you!!!

Thanks so much to several readers who pointed out that links to the PowerPoint as Assistive Technology series had broken. Sweat is flying off my brow as I get these links corrected. You should be able to access all the samples, templates, and handouts now at Google Docs in my PPT folder. Thanks so much for your patience with this transition!!

So far, so good, but I appreciate your help...

I've tested all the links and they worked fine at the time. But if you find any broken ones, please, pretty please let me know of any you come across that need repairing and I'll get right on that.

Coming up next, PPT communication on the Kindle Fire

In addition to my flurry of activity trying to update the links for you, I am also in the process of working out a communication PPT for the Kindle File (Shhhh, don't tell my daughter, as it's a surprise for her birthday next week). There is a lot the Kindle Fire does that she will enjoy...movies, audio and print books, YouTube. The Fire doesn't have many options for communication apps, though...

...and none of them appear to be ideal for access by eye pointing. For one, none appear at first glance to have customizable spacing between choices. For another, any that are built with a button format are symbol-based rather than words. We plan for the Fire to be a quick, on-the-go back-up tool, so what I can create in PPT should be just fine for those immediate messages she wants to share.

I'll keep you posted!

Two Choices Do NOT Equal a 50-50 Chance

“Whoa!” you say. “Everyone knows that you have a 50-50 chance with two choices.  What planet is this crazy lady from? ”

You are not alone in this thinking.  I hear over and over that we have to give MANY choices per question…and have gotten caught up thinking this way myself in the past. We think many choices will prove our kids aren’t simply guessing. When our kids deal with motor impairments, though, too many choices can be an access nightmare. What to do, what to do?

The fact is, with testing, selecting from two choices can give statistically irrefutable results showing mastery of information. Let’s look at how this can be…

First let’s look at what makes a 50-50 chance

We’ll start by backing up to a situation where two choices DO have a 50-50 chance of being correct. Take a coin and predict whether it will land with heads or tails up. Now toss it one time and let it land. At this moment, you DO have a 50-50 chance that it will show heads. Or tails. Agreed?

You could repeat this same random coin toss ten times and about five of those tosses would be heads.

Try it a hundred times and you should get about 50 tosses coming up tails.

Why is this so? Why do half the tosses give heads and half give tails?

Because the only factor at play is luck. All the other factors are equal for each side of the coin on every toss…the balance of the coin, the number of rotations in a flip, the speed of travel... These weigh equally on the outcome. They won’t change the probability of a guess based on luck.

If a student is genuinely guessing at answers, they are strictly shooting based on luck. You could expect about the same results as the coin toss. They would score about 50% correct on the answers of a true/false test, a sorts assessment with two columns, or another binary choice test.

When odds are no longer random

When all the factors to support student success are in place, luck doesn’t particularly influence the outcome. If the child knows the answer, has the appropriate access methods, and is caught on a day when health and sensory issues are met, then a correct answer likely has nothing to do with luck.

The factors at play—knowledge, access, and health issues—change the game completely. Testing is unrelated to the coin toss, even when there are only two possible responses.

When a child is able to score 5 correct responses on a 5-point true/false test, the statistical likelihood that this was achieved by pure guessing is about 3%.

But 3% still leaves a tiny possibility the child was guessing. Three chances in 100. How do we reduce that so we can know beyond a doubt that the child was demonstrating knowledge rather than luck?

It doesn’t take very many corrects to get pretty strong data

Five isn’t many questions for a test, but it IS a good number for a child whose ability to attend to a task is impaired by issues of access, attention, health, or sensory processing. If you can cycle through a longer test in short 5-question chunks, you can get some highly valid information in relatively short time.

5/5 correct can only be achieved by guessing 3% of the time, as we said earlier.

5/5 done twice (totaling 10/10) gives <.1% chance--less than 1 in 1000--of guessing as the means for achieving the score. That’s good enough for me (side note: this would not be adequate if we are talking about skills needed to fly a commercial airliner or perform neurosurgery, but for academic skills for most kids, it works).

5/5 done three times (or 15/15 total) only gives a .00003% chance of guessing…and that is statistically improbable. Most definitely.

The great news is that a child can still demonstrate high levels of understanding even if they can’t get a perfect score every time.

Let‘s say they can manage to get 4/5 correct on a group of True/False test questions. There is a 16% margin for guessing, which is too high to put our money on.

If they can get 4/5 again on a second try (a total of 8/10), the likelihood of arriving at this score by guessing drops to 4%. Still a little high.

The third time they score 4/5 (raising the total to 12/15), the probability of guessing drops to 1%. That is 1 in 100, so getting smaller!

The fourth time they manage 4/5 (or 16/20 now), the likelihood they are guessing drops to only .4%, or 4 in 1000. For basic academics, this satisfies my confidence they are exercising skill rather than luck.

Great news for our kids with motor impairments

This shows that kids with severe motor impairments who can only select between two responses really can demonstrate to us that their answers are intentional.

Obviously, having the motor control to indicate an answer from THREE choices is terrific for giving strong proof that your answers are not guesses. It lets you get to that point faster.

For example, in a 5-question quiz where each question has THREE responses, a perfect score of 5/5 only has a .004% chance of being achieved by guessing. Everyone can agree that this score is pretty unlikely to result from luck!

But when motor skills dictate that TWO choices are best, our kids can still demonstrate their proficiency without the fear of that guessing has influenced their scores. It just takes longer.

Also, it takes longer if they can’t achieve a perfect score every time. But it can be done. That, friends, takes a huge burden of pressure off both the student and his teacher!

A tool to simplify this statistical computation

Back in my college statistics class, we had to crunch the numbers to rule out the probability of guessing. On scratch paper. By hand. It was grueling!

Now, we have a fantastic FREE tool online that can do this for us. In  a split-second!
It’s so easy to use!

1.       On the first line, type in the "chance" of getting one problem correct, expressed as a decimal. In a 2-choice problem, the chance is .5. In a 3-choice problem, the chance is .33. For a problem with 4 choices, the chance is .25. Kids with motor issues should not be given more than 4 selections per question, so I won’t go farther.

2.       On the second line, tell how many questions on the test.

3.       On the third line, write how many corrects the student scored.

4.       The fourth line will tell you the probability that the student could have arrived at their score by guessing. The tinier the number, the less chance there is that the student guessed.

Hidden messages:  guessing and intentional misses

Scores that are not perfect (or close to perfect) hide important information for us to uncover.

Those that fall around the 50% chance of being achieved simply by luck were probably the result of guessing. So why is the student guessing? Do they not care? That’s OFTEN the case! Do they not understand? Very possible, but the fact that they haven’t established any kind of generalization, even an incorrect one, means they have not caught ANY of your instruction.

Scores that show a statistical probability that answers are actual errors (say, 0-1/10) rather than guessing are also strongly telling. When you type the figures into Stattrek.com, you will see that the likelihood of guessing only errors is a slim as guessing only corrects. There is a message in a page full of errors. Does the student understand the teaching wrongly, applying the concepts backward? It’s very possible. Is the student trying to tell you she is bored? Hmmm…we need to pay attention to this.

Are you feeling more confident now in providing tests that ask students to select from just two choices? They can be devised to give you very accurate feedback about the child’s understanding.

The key is in the number of repetitions, but even that can be surprisingly small. Once you start crunching numbers, you can see that tests don’t need to be pages and pages of questions. Go small, add more if needed, and check back with Stattrek.com often to see if you’ve eliminated the probability of guessing. You saw from our examples how a perfect score on only 15 true/false questions is statistically irrefutable as being skill rather than luck!

Let me know if you still think I’m a crazy lady from another planet or if this makes sense. Just leave a comment in the box below…I read them all!

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You might also enjoy reading:

The Best Test for Kids with Motor and Sensory Disabilities

Even kids with severe disabilities need to demonstrate their learning through tests. As we look at creating low-stress tests to accommodate motor and sensory disabilities, what type of tests should we use? Does one style work better than others for these students?  Let’s talk more about the response style that has the best chance for supporting student success.
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You want your kids to score well on tests.

As a teacher, you work tirelessly to help your students learn content and critical skills. You want to be able to prove to the world just how successful your kids are despite their special needs! That means they need to score as high as possible on classroom tests. We all know that tests play a big role in shaping a child’s educational future. We want our kids to succeed!
Yet no matter how strongly dedicated teachers and parents are, physical challenges still interfere with our students’ abilities to show us what they know. We can’t make these physical problems go away; we have to find a way to work within the same limits our kids face every day.
One standard testing format outshines all the others for accommodating physical disabilities.

To help our kids perform their best on tests, we need to reduce the physical demands of answering test questions. Of the five standard response styles typically used in classroom assessments, one stands far ahead of the others in being accessible to students with severely limited motor skills.
·         Essay—This style of response requires that students generate a lengthy answer, letter-by-letter or word-by-word. For most students with severe motor impairments, essay responses are far too motor-intensive to be practical. Avoid essay questions as a method of testing.
·         Short answer—Students are expected to generate shorter answers, ranging in length from single words or phrases to a sentence or two. When motor disabilities challenge a student, even short answer responses may be too great a demand on physical output. Rather than expecting students to generate answers, short answer questions may be adapted to allow students to choose from a list of words, lessening the motor demand considerably.
·         Multiple choice—This format challenges students to select a response from a list of potential answers. Multiple choice tests are not as easily adapted as one might assume. If we ask students to hold 4-5 possible responses in their heads while they indicate the letter matching the correct response, we ask them to perform a huge memory task. This is a different skill than recalling the information we are trying to draw from our students. If you must use multiple choice tests, ALWAYS assign reminders for each answer choice directly on cards or switches rather than simply labeling them A,B, C, and D.
·         Matching—Matching tests typically ask students to pair items from one column with items in a second column. We might ask them to draw a line to connect the items or copy the letters or numbers that precede each item. Either of these response modes presents a great motor and visual challenge. Instead, print the choices off on colored paper (one color for the prompts and one for the matching choices) and cut them into cards. Students can arrange the matches in pairs on the table, reducing the motor and sensory complexity of this task.
·         True/false, yes/no (aka binary choice)—For kids with motor planning or sensory challenges, this testing strategy far outshines the other four we’ve talked about so far. With only TWO possible responses, this style makes the fewest demands on motor planning. It sharpens cognitive focus by reducing distractions. Think about all the distractions a child has to filter out with a matching or multiple choice task; having only two possible selections reduces this problem greatly. This format makes it easy to present one question at a time, whether by masking off a single question on a page or reading it out loud to the student.
Binary choice tests are bigger than just "true/false."

Test questions that can be answered by choosing from two responses are technically known as “binary choice.” The formats you are most familiar with are probably true/false and yes/no. Questions answered with these right/wrong responses have to be worded with tremendous care, which is a skill in its own right. Poorly worded questions confuse or mislead students. When children lack the verbal skills to ask for clarification, ambiguous wording sets them up for failure. If you need help to write clear questions, refer back to most any Educational Measurement textbook. Ebel and Frisbie’s Essentials of Educational Measurement or Popham’s Modern Educational Measurement are both excellent resources.
The great news is that binary choice options for testing extend past just true/false and yes/no questions. Information can be categorized into columns to clearly demonstrate mastery of the skill being tested. This format has been used in the literacy word with a high degree of success since the 1980’s under the name of “word sorts.” Fortunately for our kids, this sorting format extends to most content areas, varied levels of complexity, and all ages of students. It can be adapted using a wider variety of access methods than most styles of testing.
Sorts used to categorize words starting with /m/
I’m a huge fan of sorts as both a practice and a testing activity. I’ve used them quite often in my classrooms and at home with my motor-challenged daughter. Sorts tend to break down skills into definable increments, making assessments easier to create. I find they direct my instruction leading up to the test so that I focus more intentionally on the objective. I’ve successfully used sorts as an assessment for pre-literate students with autism who needed to have other types of tests given orally—yet whose echolalia interfered with their ability to say anything but the last answer choice they heard. Once they understood the process of sorting answer cards under category headings, they could demonstrate the target skill independently without any verbal input from adults. Their output was now under their control and no longer hampered by echolalia. Recently, my daughter sorted her Agricultural Science vocabulary under the headings of “lactation” and “reproduction” during their dairy unit, showing that sorts are appropriate even through high school.
If you will be testing your students this week, how might you adapt the test to support the motor challenges of your students? Is there a way to convert some of the more complex response styles into simpler binary choice questions? Please leave a comment to let us know how this worked for you this week. Or, feel free to ask for suggestions on how you might accomplish this.
Next week, let’s explore the many ways sorts can be adapted to meet the diverse motor and sensory challenges our kids bring to testing.
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Did you catch last week's post on reducing the stress of testing for students? If not, be sure to check it out here!