Tag: health

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Our Family LENDs Unique Perspective to Medical Professionals

The Monday after a big birthday party is not the best day to have strangers visit my home. My house looked like Toys’R’Us exploded inside, and there was still homemade icing stuck in awkward places throughout my kitchen. Still, I made a promise, and I’m glad I did.

It was a “Day in the Life” of a family with a loved one with Down syndrome.

The Leadership Education in Neuro-developmental and related Disabilities (LEND) program asked our family to invite a clinical psychologist and disability self-advocate into our home so they could see life outside your typical treatment facility.

Clinical Psychologist, Kaitlyn Eichinger, with Troy’s brother, Hunter

“I’m so excited to get to see life from you and Troy’s perspective. I think this will change how I do my job in a clinical setting,” explains clinical psychology graduate student Kaitlyn Eichinger.

Most doctors, therapists, and clinical psychologists view disability from a pathology standpoint. When your goal is to diagnosis and treat, it’s sometimes hard to see past the disability. Also, medical professionals can sometimes forget that the parent is an expert on their child’s needs, and can provide invaluable insight.

Read Related Post Here: Ending Organ Transplant Waitlist Discrimination 

The LEND program recruits graduate students, post-doctoral fellows, and community leaders for a year-long interdisciplinary training program focused on improving the health of children with developmental disabilities. Spending time with families as part of the Family Mentor program is only part of the year-long LEND training.

Cincinnati Children’s LEND program is one of 52 programs nationwide, but our local program is the first in the nation to include self-advocates as trainees. Rachel Rice will meet with our family alongside Kaitlyn Eichinger, and will do all the same coursework.

Self-advocate, Rachel Rice, with Troy

“I like to prove people wrong about my disability. I was told I’d never be able to do office work, but I’ve worked in an office setting for the last five years and now work with Warren County Board of Developmental Disabilities,” says Rice. I thought Rachel brings a great perspective herself. It’s not often I get to hang out with adult self-advocates with disabilities other than Down syndrome, and Kaitlyn and I both agreed she rocked it!

Read Related Post Here: The Link Between Sleep and Learning

Troy and his siblings were excited to welcome Kaitlyn and Rachel into our home. They showed both ladies that Troy is more alike than different, and is an invaluable member of our family.

The two trainees will get a chance to meet with us two more times, in settings outside our home like a therapy session or playground. I’ll be sure to continue to share our journey with Kaitlyn and Rachel. Although they may only be getting one family’s perspective, it’s still gives them a glimpse into the personal lives of their patients.

There’s LEND Programs in all 50 states. If you’re interested in becoming a Family Mentor click here.

 

 

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Time to Call, Tweet, and Email Your Senator…AGAIN!

It’s baaaccckkkk! A new bill to repeal the American Care Act, and in turn cut Medicaid. 

Remember the endless summer? When we all tirelessly advocated to kill the bill, and it worked. A new, worst bill is gaining traction in the Senate. Look at the graphic below to see what it would do:

It seems Republican Senators are hell-bent on keeping their campaign promise, but in doing so they’re also threatening to restructure and CUT Medicaid.

Why should you care about this bill? Because it will have a negative impact on people with disabilities. People with Down syndrome often use Medicaid throughout their life, even if their parent doesn’t meet the financial threshold for consideration. That’s because most school districts use Medicaid dollars for speech, OT, PT, bus and other services. Medicaid dollars are used in transitional services when our loved ones become adults. That means they can qualify for a job coach, transportation, and housing supports all because of Medicaid.

See Related Post Here: Why Medicaid Cuts Would Devastate the Down Syndrome Community

Here’s how this specific bill will impact the disability community:

  • Puts per capita caps on Medicaid, leading to devastating cuts in funding
  • Eliminates the Medicaid expansion and marketplace subsidies and replaces with an inadequate block grant
  • Allows states to waive protections for people with pre-existing conditions
  • Allows states to waive the requirement to provide essential health benefits (like mental health and substance use services, rehabilitative and habilitative services, and maternity care)
  • Penalizes states that have invested in their Medicaid system

You can read the actual bill here.

See Related Post Here: We Meet With Ohio Senator Portman’s Office in Last Ditch Effort to Save Medicaid

We’ve been here before, you know the drill! Your marching orders are as follows:

CALL (202) 224-3121 

EMAIL addresses

TWEET handles

Your U.S. Senator and tell them how important Medicaid is to you and your family. Ask them to oppose the Graham-Cassidy bill or any other bill that would cut or cap Medicaid. Use the follow hashtags: #SaveMedicaid #NoCutsNoCaps

We killed the bill once. We can do it again! But it’s going to take a village!Â