Tag: Action Alert

Posted on

This Land was Made for My Son with a Disability, Too

The Fourth of July is a time of reflection of our nation’s past and present. As a mom to a child with a disability and former history teacher, I often marvel at how far our nation has come in one generation as it relate to the human rights of individuals with disabilities.

Surely, when Thomas Jefferson wrote we have the right to “life, liberty and pursuit of happiness” in the Declaration of Independence he wasn’t thinking of people like my son who has Down syndrome. Still, this document and our nation’s constitution has been used as proof that my son deserves a life of choice and self-determination with needed supports.

When I was born in 1982, individuals with Down syndrome had a life expectancy of 25-years-old. Many still lived in neglected and abusive institutions, were denied life saving surgeries, and underwent forced sterilizations as approved by the Supreme Court in 1927.

One generation later, in 2012, when my son was born life expectancy more than doubled to 60-years-old. Many laws contributed to this amazing feat including Medicaid (especially the community and home-based waivers program), the Americans with Disabilities Act (ADA), and Individuals with Disabilities Education Act (IDEA).

Troy (left) with his twin, Hunter

Still, forward progress has often been an evolution, rather than a revolution of inclusion for people with disabilities. At times like now, there seems to even be a back-pedaling of progress. With threats seeming to come from every direction, it’s hard not to lose heart. It’s also hard to know where to focus your energy. You’ve likely heard that advocacy is a marathon, not a sprint. Check out some of the issues facing our community below, and pick up the phone, write an email, or give a speech. Small acts from us all can lead to big change and forward progress.

  1. Inclusion in schools for Students with Intellectual Disabilities: federal reports show that only 15% of students with intellectual disabilities are included in general education for the majority of their day. The Supreme Court of the United States, in the Endrew F. case, demanded a higher expectations for our students with disabilities, but some schools are still segregating them. Join this Facebook group that is teaching parents how to address their local school board to advocate for inclusion in general education (click here).
  2. Achieving a Better Life Experience (ABLE) Act: This law allows people with developmental disabilities to save above the $2,000 a month threshold without jeopardizing their government benefits. Still, disability advocates say more people need to open ABLE accounts or the program will be in jeopardy. That’s why advocates are asking people to urge their Congressmen to pass the ABLE Age Adjustment Act to increase the age of disability onset. Find out more here.
  3. Ending Sub-minimum Wages: Most people with disabilities want to work, but more than 80% are unemployed. Those that do work are often segregated in sheltered workshops, earning pennies on the dollar. The Workforce Innovation Opportunity Act (WIOA) hopes to ensure all people with disabilities earn at least the minimum wage, while creating a systematic approach to ending sheltered workshops. Send a letter to your representative supporting this bill using the National Down Syndrome Congress’ pre-formatted form. Click here.
Troy playing baseball with his typical peers

In a time of growing distrust of government, it’s important to realize that federal policies like the ones above have made a big difference in the lives of the disabled.

It’s important to not become complacent. Let’s fight to continue the progress made by so many.

Posted on

How to Vet College Programs for Students with Intellectual Disabilities

Vineet Narayan graduated from high school last spring and during his gap year he’s on the hunt for a college program that fits his needs. Searching for the right college program is daunting for most students, but Vineet’s mom, Nithya Narayan, says sending her son with Down syndrome to college adds a few extra concerns.

Vineet Narayan

Although the college search process has been surprisingly typical in many ways, Narayan says “It did seem surreal to hear from schools and acknowledge the gap between having no access to curriculum and having to audit college classes, which seems incomprehensible. So I attended the State of the Art conference to see if he could really attend these programs without barriers. We want him to have the liberty to choose classes and make a career path, which is what the typical students do. As I was researching, some of these programs have definitive classes that they have to take which is not what we want.”

College programs for students with Intellectual and Developmental Disabilities (IDD) have increased by 73% in the last decade. Currently there’s around 260 programs across the nation. These programs range from fully inclusive community colleges or 4-year university settings with on-campus living, to segregated programs on college campuses. There is much to celebrate with this tremendous growth of post-secondary opportunities for students with IDD. But compared to the 7,000 college programs for typical college students across the nation we’re really still in the infancy of this movement.

Read Related Post: College Scholarships for Students with Down Syndrome

I’ve written recently about the good, the bad, and the ugly of these college programs. Although there is federal regulations for the few programs that receive federal funding (about 25 programs), the vast majority receive no federal or state oversight. It’s up to the college and increasingly parents to self-monitor the efficacy of these programs. So, how can parents and students ensure the program they choose lives up to their expectations?

“Parents and students don’t know what they want until they don’t get what they want. Students with Intellectual Disabilities don’t often go to college night like their typical peers. They go to transition fairs instead. There needs to be a whole mindset change starting in high school,” explains Think College Co-Director, Meg Grigal.

Think College is a great place to start your search. Parents and students can search for programs using an interactive map, and check out the organization’s new “How To Guide on Conducting a College Search.” Grigal says parents should share this with your child’s high school transition team to better prepare for that next step.

But don’t stop there! Jennifer Luebke and her 19-year-old son, Antonio, had to renew his college search after the program he was attending failed to keep promises of at least a 50% inclusive course load (As of February 2019, the matter has been resolved to the satisfaction of all parties). Antonio left the program after a year, and now Jennifer has many more questions for the next college Antonio attends. Even though your student may be looking for a different type of college experience, her questions could help guide your inquiry and get you thinking about what questions to ask.

Read Related Post: Bethel University Fails to Keep Promises of Inclusive Education for Students with Intellectual Disabilities

“We developed key questions that will hopefully reveal answers that go beyond the self-reported information on Think College and the college’s marketing materials,” explains Luebke. Parents from the Facebook Group “Families Think College” also chimed in with other questions that are added to Luebke’s questioning below:

  1. “Academic Inclusion: What courses (if any) are inclusive? Provide a list of catalog courses that are available for students with IDD to take where the coursework is modified and where they receive in-class and out-of-class academic support. Do you have courses where typically-abled students are also present, but their role is different from a student with IDD (e.g. as a mentor, co-enrolled as a lab to help students with disabilities, etc.)?
  2. Residential Inclusion: Do you have a policy that prevents a student with IDD from being roommates with a typically-abled student?
  3. Social Inclusion: Tell us how students with IDD are intentionally and regularly included in campus social activities?
  4. Job Training and Internships: How will you leverage his strengths to provide job training to him? What might a few conversation starters be to help him identify a good job fit? What internship opportunities do you have that might be a good fit for him considering his strengths? What percentage of students are employed after leaving the program?
  5. Parental Involvement: Do you require a student with a disability to be their own guardian? How do you determine what level of communication is appropriate with parents and how do you calibrate it?
  6. Metrics: What metrics do you track and how often do you track them to assess the effectiveness of your program and areas for improvement? With whom do you share your findings? How do you measure and assess each student’s learning and progress?
  7. Membership & Belonging: Are students in your program considered enrolled students in the university? Do they have full alumni benefits when the complete the certificate program? Do you have a separately published student handbook and policies apart from the general student handbook (with some areas where additional support is provided where needed).
  8. Philosophy of Inclusion: What is your program’s definition of inclusion or what is your program’s inclusion statement that guides the program?
  9. Qualifications: What are the program director’s educational background, work experience, and specific qualifications to run this program? Are the professors who teach the courses that students with IDD take qualified university professors? What training have the professors received in universal design? What training do students on campus receive about ability diversity?
  10. Please provide us a list of all students and alumni (and their parents and families) that we may contact to ask further questions about your program.”

Nithya Narayan says a “parent comments section” could provide invaluable real-life reviews of how a program actually operates. She says good programs are out there, if you know how to look. “When typical kids go away they shape their life by being an adult and making decisions on their own for their life, and we are very glad that opportunity is available for Vineet.”

How’s your child’s college search going? What is your child looking for in a program and have they found it? What questions have you asked? Share in the comments below.

Posted on

Deportation Orders Would Leave U.S. Teen with Down Syndrome Without Mother

UPDATED as of Friday, November 24th at 5p.m.: Sami’s Sister says their mother, Fatiha has been granted a 30-day extension so the Immigration and Customs Enforcement’s acting director for our district can review the case. This means phone calls to your Congressman are even more important. Find your Congressman’s phone number and a script of what to say in the link below.

This Thanksgiving may be the last one for 15-year-old Sami with his mother’s cooking, love, and complete devotion. After 21 years of living in the United States Sami’s mom, Fatiha Elgharib, is set to be deported back to Morocco on Monday.

“Sami doesn’t understand what’s going on. I keep telling him I may have to go away, but he sees me here with him, taking care of him. He has no concept of time or the future, and what impact that has on him,” explains Fatiha Elgarib. The current U.S. Administration’s “silent raids” have also not taken into consideration the negative impact and hidden cost of pulling families, like Sami’s, away from each other.

Like many people with Down Syndrome, Sami has multiple severe health conditions, including congenital heart malformation, severe sleep apnea, and hypothyroidism. Sami is nonverbal, has had multiple surgeries, and requires round-the-clock care. Fatiha is his primary caregiver.

Find out how you can help Sami below!

If You Live in Ohio, You Can Call Representative Mike Turner and Asked Him to Stop Fatiha’s Deportation. Click Here to Find Out How to Contact your Congressman.

Although I’ve heard about recent controversial deportation stories, Fatiha’s really hit home for me. She has a son with Down syndrome, and lives in the same Ohio city as I do. When I learned about her fight to stay in America, I knew I had to meet her and her son. I visited their home the day before Thanksgiving. Fatiha was visibly shaken and a had permanent expression of worry on her face.

Fatiha, her husband and two daughter’s came to America on a work visa in 1996, and have been trying to gain legal residence ever since. You can learn more about the legal battle and how things went downhill after the terror attacks of 9/11 here. “There’s terrible poverty in Morocco; no chance to find a job. I could never take Sami back there. With his multiple health problems he could die. He would have no rights. I’d have to hide him away,” Fatiha describes. If she is forced to leave on Monday, Sami (who is an American citizen) will be left without his primary care giver.

Related: Down Syndrome in Africa: Hidden in Plain Sight

Sami’s second oldest sister, Sara, told me she will likely have to stop working full time to care for her brother, since her father has the most secure job, her oldest sister has a family of her own, and her youngest sister is still in school. She’s especially nervous because her legal status is likely to be in limbo as well.

“What is happening is not about protecting American communities—my 15-year-old brother, a citizen by birth, is about to lose his main source of care and support. While I am a Deferred Action for Childhood Arrivals (DACA) recipient, my status will soon be in limbo, too, since the administration revoked the program. And then what will my brother do? And what of the communities that my sister and I are enmeshed in, that we’ve contributed to? People make up communities, not their papers. I was 5 when I came here. I went from kindergarten through high school here. This is my country, these are my people,” says Sara.

Sami with his sister, Sara, and mother, Fatiha

Related: Read Sara’s Perspective, “Is My Story Being Erased?” 

Another local resident, Shannon Sutter, says she met the family years ago when her own son with Down syndrome was very young (Sami and her son are the same age). Her oldest son also goes to school with one of Sami’s sisters. She says the current administration’s push to fulfill campaign promises is hurting honest, hard working immigrants. “I am all for sending trouble makers back to their own country, but this mother is NOT a trouble maker and shouldn’t be forced to leave. Unfortunately, because people only hear that she’s here illegally and don’t know the whole story (some basing their opinion on hearsay or rumors), many think she made her bed by not actively pursuing citizenship and have no sympathy for her situation,” Shannon Sutter says.

The family has had four lawyers in the past 21 years, and have spent a small fortune trying to gain citizenship legally. “This has come from nowhere. We pay taxes, I have a driver’s license and a bank account. I’ve never committed a crime or even have a speeding ticket,” explains Fatiha.

A statement by the Immigration and Customs Enforcement (ICE) states “Over the last decade, Ms. Elgharib’s immigration case has undergone exhaustive judicial review at multiple levels of the nation’s courts… (which) have uniformly held that Ms. Elgharib does not have a legal basis to remain in the U.S.” U.S. Congressmen in the past have interceded to help the family.

The Ohio Student Association plans to have more than a hundred people at the John Glenn International Airport in Columbus, Ohio on Monday to protest the deportation. Find out about the protest here. And what is to happen to Sami and his family if Fatiha is in fact deported?

When I asked the family what the Down syndrome community could do to help support Sami, they said respite care would be the most helpful. Sami has multiple appointments every month, as well as the logistics of caring for him before and after school.

If you are interested in helping Sami please comment below or message me, and I will get you in touch with his family.

 

Posted on

National Down Syndrome Congress Starts Nationwide Grassroots Advocacy Group

Supporters of the Down syndrome community are by definition a fierce group. Parents and allies often will do anything to create a better path for their loved one with Down syndrome.

The need for grassroots advocacy training and guidance is even more important with current political threats to supports and systems (like healthcare, education, and employment) that people with Down syndrome rely on. Now, the National Down Syndrome Congress is giving you one more way to advocate.

NDSC Convention in Washington, D.C.

Today NDSC rolled out the National Down syndrome Advocacy Coalition or NDAC. The coalition will be a nation-wide, grassroots group of self-advocates and allies, working together to support policies that benefit the Down syndrome community. The program hopes to train volunteers to effectively engage with lawmakers and other change-makers to promote positive advances for our loved ones with Down syndrome.

Related: Advocates Urge Congress to Increase Funding for Down Syndrome Research

“NDAC will provide a formal mechanism to engage individuals – regardless of level of advocacy experience – in these efforts in order to maximize the power of our community’s voice,” explains NDSC executive director, David Tolleson.

There will be 3 levels of membership, and advocates at any level of experience (or no experience) can get involved:

  1. NDAC Members: Volunteer advocates of all abilities and levels of experience. There is no selection process to be a NDAC Member, but you will need to be a NDSC member first (if you attend the NDSC convention you’ve already paid the $50 annual membership fee). Find out what other benefits you receive with an NDSC membership and sign up here.
  2. NDAC State Leaders: Volunteer advocates with more experience, who will serve as the main grassroots organizers for their state. NDSC hopes to have two to three advance advocate organizers per state. NDSC will be rolling out this level of membership in the new year, and state leaders also must be NDSC members.
  3. NDAC Group Members: These are local, state, or national groups that can be Down syndrome specific, but also cross-disability groups that want to help with outreach and sharing information. The fee for group membership is $20, and entitles one group representative to be the point of contact for NDAC. The group fee is waived if the group is already an NDSC affiliate.
Chris Newlon and her 14-year-old daughter, Rebecca

Long-time advocate, Chris Newlon, who’s 14-year-old daughter, Rebecca, has Down syndrome says the more training opportunities to advocate the better. “Advocating isn’t specific to one organization or group. Nor is it only for politicians or educators. The more we advocate the better, from helping little kids on the playground figure out how to approach a non-verbal child to speaking with our congressmen. Our goals, our focus, is to make the lives of those with disabilities not seem so ‘alien’ but just part of life itself,” Newlon says.

Related: How to End Organ Transplantation Discrimination for People with Down Syndrome in Your State

NDSC Policy & Advocacy Director, Heather Sachs, will be heading up NDAC and says she’s excited to encourage advocates of all levels to find their voice:

“NDSC has been involved in advocacy for decades, but we have really established ourselves as the leading voice on issues such as education, Medicaid, health care, transition and employment policy over the past year. We did a massive amount of outreach and grassroots organizing during the health care and Medicaid battles over the summer, and those efforts laid the groundwork for NDAC. There is a clear need and desire for more grassroots advocacy training and opportunities in our community,” explains Sachs.

Want to apply to be a NDAC member? Click here.

Are you a NDSC affiliate or cross-disability group and want to join arms with NDSC? Email lauren@ndsccenter.org

NDAC State leaders can start applying in January of 2018. 

“We encourage everyone to become a member of NDAC and ask your family and friends to join as well. Given the constant threats to Medicaid, health care, education and employment, the NDSC policy team needs help from a large grassroots army to advocate for equal rights and opportunities for people with Down syndrome. Join us!” Sachs says.

For more information on the National Down syndrome Advocacy Coalition click here.

Tell me about your experience as an advocate, or what experience and training you would like to gain in your advocacy journey below.

 

 

 

 

 

Posted on

United Airlines Crew Kicks Eagle Scout with Down Syndrome Out of Exit Row Without Explanation

United Airlines crew allegedly decided with one look that George Mason LIFE grad and Eagle Scout, Sean Cross, was not able to sit in an exit row seat on a recent flight. That’s because the 25-year-old has Down syndrome.

Instead of presuming competence, or at least asking Cross if he was willing to assist in an evacuation, the flight attendant refused to talk or even look at the paying passenger.

Sean Cross, George Mason LIFE Graduate

As relayed by Sean’s mother, Brenda Cross, a flight attendant demanded that the Cross family give up their seats immediately, without explanation. When Sean’s father, Patrick, asked why, they were told “He can’t sit in the exit row.” When the flight attendant was asked to speak directly to Sean, the flight attendant would not look at or speak to Sean. Subsequently, the Cross family were told they would be removed from the plane if they did not move immediately. This was done loudly and very publicly, in contradiction to United’s policy to speak quietly to passengers asked to move. The result was other passengers yelling at the family.

Read Related Post Here: How Loving Someone With a Visible Disability Forces You to Stand Out

Sean Cross and his family at the Eagle Scout Court of Honor

“They loudly announced that we had to change seats or be forcibly removed. When we asked them to talk to Sean they walked away. They then announced over the speaker that there would be a flight delay. Other passengers became irate and yelled “just move”. We moved. The pilot then got on the speaker to tell everyone to thank the volunteers who gave up their seats for us, to which people applauded, as if we were the cause of the problem. It was humiliating. It was discriminatory. This is a clear case of ableism on United’s part,” describes Brenda Cross, Sean’s mother. 

What’s United Airlines’ policy on sitting in an exit row?

“The government requires any passengers seated in an exit row to be 15 years of age or older, be willing to assist in an evacuation and have no limitations that would prohibit their assistance. Before allowing passengers to travel in exit row seats, United must determine if they are able to take all required actions in the event of an emergency.”

There are 2 separate times when the airline is supposed to ask about exit row. First, as you scan your boarding pass at the gate. They did ask Sean there and he responded “yes”. They are supposed to ask again at the seats, which they never did. That’s when the Cross family were told to leave.

According to the Cross family, the flight crew at no time inquire as to whether or not Sean was capable of providing assistance to others in an evacuation. He was demanded to move simply based on the way he looks. 

If they would have asked Sean they might have learned that he if fully capable: an Eagle Scout, George Mason LIFE graduate, employee who lives independently. Even if they didn’t think he was capable after speaking to him, at least they wouldn’t have assumed incompetence based solely on a visible disability.

The flight attendant that initiated the action later told United Airlines Representatives later that she based the decision on “previous interactions with a person with Down syndrome and it had nothing to do with Sean.”

Read Related Post Here: Ending Organ Transplantation Discrimination

The National Down Syndrome Congress has issued a letter to United Airlines CEO, Oscar Munoz, demanding an apology for the family and something even more impactful:

“We believe that United should review its diversity sensitivity training and, when re-tooled, send this flight crew. We would like to know what steps United will take to ensure that no other person with a disability is treated in this manner,” wrote NDSC Executive Director David Tolleson.

Here’s my call to action:

Tweet: @United ableism is not acceptable. Apologize to Sean Cross #UnacceptableUnitedAirlines #ShameOnYouUnited.