Communication is Key to Self-Advocates’ Pursuit of Goals

This summer I started a “Self-Advocate Communications Workshop” in my local area, and I’ve been blown away by the progress of the teens and adults with Down syndrome.

Honestly, I didn’t have many expectations for the workshop. I just wanted our local self-advocates to better represent themselves and the organization that supports them (MVDSA).

But watching our group of self-advocates rehearse for their role at our 15th Annual Buddy Walk literally brought happy tears to my eyes. I know it sounds cheesy, but they are really starting to act like self-advocates by communicating their wants and needs to people outside their family. 

Our mantra for the workshop is “I Can!”

Many of our self-advocates started the workshop apprehensive to speak in front of strangers, to look someone in the eye, and tell others who they are and what they stand for. The “I Can!” mantra helped them put into words their goals for the Buddy Walk and life in general.

In our last workshop before the Buddy Walk our Theater Educator, Stephanie Radford (heavy on the “RAD”), brought in strangers to test the self-advocates’ new communications skills.

They’ve been working on:

  • conversational skills
  • non-verbal communication skills like eye contact and body language
  • improv skills
  • speech skills

The self-advocates have warmed up to us over the last three months, but we wondered how they would perform in front of complete strangers. We set up a practice advocacy table with games and brochures, like they’ll have at the real Buddy Walk.

Practice with strangers to prep for the Buddy Walk

The first interaction was a bit forced, but as the strangers started asking the self-advocates questions about their life everyone started smiling and having a good time. The self-advocates used what they’ve learned about eye contact and reciprocal conversations to engage these strangers they’ve never met. I was impressed! They know that people may have a harder time understanding them, but still they advocated for themselves and got the job done.

I can’t wait to see how they do September 16th at our Buddy Walk!

They’ll be the ambassadors of the Miami Valley Down Syndrome Association; running our advocacy table and introducing national, state, and local politicians to Buddy Walk attendees.

Self-Advocates with our volunteer actors

Brother Urges Parents to Prepare Typical Siblings For the Future

“My sister helped shape the trajectory of my life!”

Phillip Clark adores his sister, Sarah.

“I was 4-years-old when she was born, and I knew she was different then. From a young age, I knew I would always protect her.”

Clark kept his promise. He even created a career path centered around Sarah and other individuals with disabilities.

Clark owns ENABLE Special Needs Planning, LLC, and works with families daily to get their financial, life, resource, and legal plans in order for their child with a disability.

Phillip with his parents, wife, and sister’s Sarah and Grace

“We often talked about future planning in our family. When I was going away to college, my parents sat me down and explained how they prepared for Sarah’s future. They said she would live with one of my cousins if my parents both passed on. I told them ‘absolutely not! Sarah and Grace (the youngest, typical sister) would live with me’.”

When Sarah was born 28-years-ago, doctors told her parents she would
never learn to read, among many other limitations. However, today, Sarah works as a second grade teacher’s aide, tutoring students in reading.

 

Clark credits Sarah’s success to his parent’s diligent planning early on. “They always focused on her abilities, and they always included my typical sister, Grace, and I in the decision-making process.”

Phillip Clark with his sisters, Sarah and Grace

In his professional experience, Clark has found that parents who didn’t plan are struggling as their child ages.

“Some of these parents are in their 60s, and their adult child is in their 40s. Many didn’t plan, and now there’s not much help for them. Most end up in government run day programs, because the parents can no longer care for them at home.”

His advice, start early and think abundantly about your child’s future. Include your typical children as early as possible in the future decision-making plans.

Clark is optimistic about the opportunities that individuals with special needs and their families currently have. He believes these opportunities will continue to grow as awareness continues to get stronger.

“The generation before Sarah was often institutionalized because people didn’t realize the profound impact that individuals with special needs could have on their families, communities, and businesses. Sarah’s generation was the first to widely stay at home with their parents; but the awareness and opportunities weren’t yet there for them to be fully included in all aspects of life. The next generation will have countless opportunities for inclusion, and parents need to be prepared for this new reality.”

Clarks says it’s not enough to plan financially. 

His personal journey allows him to understand the difference in planning  special needs families face, compared to typical families. He explains that every aspect of your family’s life and child’s life must be carefully considered.

It is important to plan financially, but equally important to create a Life Plan and a Resource Plan. He says you must make a Life Plan for your child that gives him or her every opportunity to live a purposeful, impactful life.

As for Sarah, Clark says she is busy leading a fulfilling and purpose-filled life, but he’s prepared to help her when she needs him.

Clark is a Special Needs Planning consultant licensed to serve families in every state. He provides Life, Resource, and Financial consulting services and referrals for Legal Planning. He also created a database of resources for special needs planning. See what services Clark can provide your family here.

Inclusion Evolution and it’s author did not received any services from Clark or Enable Special Needs Planning.

Not Dead Yet!

Imagine needing a life-saving kidney transplant, and being denied access to an organ transplant wait list.

This is the reality for some Americans living with a disability. They need a life-saving organ transplant, but doctors tell them they’re not a good candidate. Why? 

Often the reason is discrimination:

  1. Some doctors may refuse an organ transplant for individuals with disabilities that need help to follow post-transplant treatment plans (even if they have already secured post-op help).
  2. Some doctors may believe that individuals without a disability should have higher priority to organ transplant wait lists. 

But tell me, who gets to decide who’s life is more significant than another’s?! This is not only a right to life issue, but a civil right’s issue!

James Wellman is living this nightmare right now. The 26-year-old with Down syndrome is likely to die soon because he his kidneys are only functioning at 12%. Doctors won’t let him on an organ transplant wait list. His family is distraught. Watch his story below.

Ohio House Representative Niraj Antani

The American with Disabilities Act (ADA) provides broad protections against healthcare discrimination, but there’s no federal enforcement when it comes to organ transplant discrimination. Often their loved one with a disability dies while families try to find recourse through ADA.

That’s why states must step up to ensure people with disabilities are protected from discrimination.

I introduced possible legislation to my state legislator, and after agreeing it was needed he spent the summer drafting the bill. Ohio State Representative, Niraj Antani, plans to introduce the bill to prevent organ transplant discrimination in my state next week. You can view the draft bill here: Organ Transplant Waitlist Anti-Discrimination Bill

Only 5 states (California, Massachusetts, Maryland, Pennsylvania, and New Jersey) currently have organ transplant anti-discrimination laws. Three other states (Delaware, Kansas, Oregon) currently have a bill working it’s way through state legislatures. All of these bills are bipartisan.

With help from disability groups across my state, as well as doctors’ organizations, I hope we’re able to lead the charge against discrimination for our loved ones here in Ohio…

Because they’re #NOT DEAD YET!

If you’re interested in introducing an organ transplant anti-discrimination bill in your own state visit my “Advocacy” page under “Resources.” The NDSS created a toolkit for advocates with model legislation and other helpful resources on this topic.

I will post updates of our efforts here in Ohio as well.

 

 

How to Spend ABLE Account Money

We opened an ABLE account for our 4-year-old son, Troy, this past spring. Ultimately, Troy will decide how to spend this money when he becomes an adult, and his spending options are far-reaching.

The sky is the limit for possible ways to spend money from an ABLE account. 

The Achieve a Better Life Experience (ABLE) Act states that money can be spent on any “qualified disability expense,” and that term is defined very broadly. As long as the beneficiary is eligible, the account can be used to offset the cost of any disability-related expense. This doesn’t just mean medical expenses.

“The ABLE account should be used to maintain or improve a person’s life, well-being, or independence,” explains Chris Rodriguez, Public Policy Director for the National Disability Institute. Categories that these expenses could fall under include:

Education (tuition, books, tutoring)

Housing (rent, mortgage, property tax, funds used for housing expenses will NOT impact SSI  so long as the funds are disbursed from the account in the same month in which the housing expense is paid)

Transportation (Uber, taxi, car payment, bus)

Employment training and support (job coach, continuing education, certification,Interview prep and resume development, Transportation to employment)

Assistive technology and personal support services (cook, housekeeper, iPhone, Dragon Dictation)

health, prevention and wellness (yoga, ballroom dance, medical bills)

financial management

legal fees

expenses for oversight and monitoring

basic living expenses

funeral and burial expenses

The ABLE Act explicitly states that the account is designed to SUPPLEMENT Medicaid supports, not replaces these services. “ABLE can cover gaps in services and supports and, for some people, enable them to maintain Medicaid coverage while possibly saving for future expenses,” says Rodriguez.

ABLE Account holders do not need pre-approval to spend the funds, and many ABLE programs provide pre-paid debt cards to get the money instantly.

Rodriguez says you do need to keep an informal record of what is spent. “Keep track of your receipts of all purchases and record how each expense meets the definition of a ‘Qualified Disability Expense’ in case you’re audited by the IRS,” explains Rodriguez. He says the explanation only needs to be a sentence or two, and if the account holder uses a debit card it will likely keep electronic receipts for you.

Here’s an example of how you can record the Qualified Disability Expense:

Expense: Uber

Cost: $25

How this qualifies as a Qualified Disability Expense: Troy uses Uber to get to work on snowy days, because public transportation is sometimes slow. Without Uber Troy may not get to work on time. Employment and transportation improve Troy’s independence.

Misuse of ABLE Funds

Rodriguez says there are two ways to misuse an ABLE account, potentially threatening the account holder’s eligibility for federal means testing.

  1. Opening more than one ABLE account. “There’s a 10% penalty and income taxation on ABLE funds if it’s found that a person has more than one account. It will also threaten their SSI benefits,” Rodriguez explains.
  2. Spending money on something other than a Qualified Disability Expense. “The same penalty applies if the IRS finds that the ABLE funds have been used on non-QDE.” Rodriguez says the funds can indirectly benefit someone other than the account holder, but the account holder should be the primary person benefitting from all expenses.

If you’re interested in comparing different state ABLE programs go here. To learn more about the myths of ABLE accounts click here. And if you want to learn more about ABLE go here

 

Evie’s Sleep Story

The Following is Evie’s Sleep Treatment Story as Told By Her Mom, Jen Alge: 

Read about new research that links sleep issues with cognitive, memory, language, and behavior issues HERE.

I could write a book about this. Evie’s had 7 sleep studies. Her first was at 11 months, because they were trying to rule out pulmonary pressure issues before doing heart surgery. She had mild apnea then.

We did another sleep study before her first set of tubes and they found she had severe sleep apnea. They put tubes in and took the adenoids out. She still had severe apnea. They then did the tonsils along with a tear duct probe and another set of tubes. Then her apnea was moderate so the tonsils helped a bit.

Then we did a simi MRI to get a better read on her airway. That helped the docs a ton. I highly recommend that procedure. But that showed us just how obstructed her airway is so that’s when we started the CPAP (Central Positive Air Pressure). Due to her tiny facial structure and age (she started this when she was 4) it took a while to find the right mask and pressure that she would tolerate.

Doing a sleep study to titrate the machine was the most challenging sleep study- keeping a canula in with a CPAP is rough. So they gave her ambien to get that result. Then after several months of her only wearing the CPAP for 2 hours we did another sleep study and this time with a time-released melatonin. That did the trick.

So Evie takes a pill like a champ every night along with her nasal steroid and allergy meds to open her airway. After we got her pressure where it works best and a full face mask, she wears her CPAP an average of 7 hours a night. Now, she’s on a pressure of 11, and the full face mask isn’t the best option because when she moves the seal breaks pretty easy. So we’re not at the finish line yet. But the docs are happy with her use and they want to kick us out of the upper airway clinic.

I’m holding on because, yes, she does wear it on average 7 hours a night, but that’s only because I’m in her room 5-8 times a night at least putting the mask back on. She lets me put it back on, but man is this lack of sleep going to get old someday soon. And I’ve definitely considered other options like orthodontic pieces and the surgeries they really wanted to do when she wasn’t wearing her CPAP more than 2 hours.

Those surgeries are 3 in total: 1. Cutting the back of her tongue and pulling out some tissue. 2. Cutting away her lingual tonsils at the back of her throat (this is a risky procedure with a long recovery due to the risk of her throat swelling and closing up- lots of steroids) 3. The insertion of a screw under her chin with a string tied to her tongue to keep it forward. Evie’s problem is not the tongue, the throat or the width or length of her mouth- it is all three. So only all three procedures would solve it. Oh and all three procedures only have a 60% success rate so she’ll likely still need a CPAP. 🙂

I’ve notice no behavior changes since the treatment. Evie’s always been a smarty pants and she talks all day long so I can’t credit the CPAP for any changes there. I will say she is getting more air and isn’t gasping for breath or snoring with the cpap on so that’s a relief. The behavior changes might be more long term given her age.