Tag: advocacy

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A “Promise” for Independent Living and Employment

Will my son, Troy, always live with us? Will he have a fulfilling career? What will happen to my son when my husband and I pass away? These are questions every special needs parent must face.

A new trend includes places like “Promise of Brevard,” in my hometown. These type of communities include employment within the community, and supported living. Parents are often the brainchild of these communities. Supporters point to low employment rates for people with developmental disabilities, and how issues with transportation often hinder any employment. The idea is that everything is on-site. Opponents of this new trend argue that it leads to further segregation of people with disabilities.

Promise of Brevard is a 39 acre community especially for individuals with disabilities. It will have independent housing with support for over 120 residents with disabilities, as well as vocational training and employment at one of its 9 businesses on campus. 

Betsy Farmer breaking ground at Promise with her adult son, Luke.

The community is the realization of a promise Betsy Farmer made to her son, Luke, when he graduated from high school. Luke wanted to live independently and work like his typical brother, Josh.

“Promise is a place where young adults with special needs can live a life full of opportunities and freedom never thought possible,” founder Betsy Farmer explains.

Promise Thrift Shop

Over 270 individuals applied to live on Promise, but so far there’s only room for a little over 120.

Promise’s first business, a thrift shop, has been open for about a year and in its first month they had over 1500 customers. Six “Promisers” with disabilities are working at the Promise Thrift Shop.

The property will be more like a walkable community with a cafe and bakery, doggy daycare, Field of Dreams accessible sports complex, skate park, splash pad, festival area, bed and breakfast, accessible playground, and equestrian riding center.

Construction overlook of the residents area

More than 200 community supporters, and continuous fundraising events made the community possible.

Promise Cafe and Bakery will employ people with disabilities

All of Promise’s businesses will provide vocational training and employment for its residents with disabilities.

Related: InclusiveU: What College Should Look Like for Students with Intellectual Disabilities

Ten college students from area universities will serve as housing assistants, so that residents get the support they need to live independently. There are also typical adults that rent apartments within the community. Opponents argue that this is not enough. That a truly inclusive community would have people without disabilities living beside those with disabilities.

Tell me about communities in your area below. How do you feel about this new trend? Do you feel like it’s new at all, or just another form of segregation for people with disabilities?

If you’re interested in learning more about Promise of Brevard, or would like to donate head here.

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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.

 

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The Value of Down Syndrome

What’s the value of Down syndrome?

Can you put a price on wasted pain?

Parents dreamt of a “perfect” baby, but are handed the answer to life’s true gain.

What’s the value of Down syndrome?

Can you put a price on perspective?

What often seems like a curse, turns into a blessing in the disguise of beautiful almond shaped eyes.

Related: Open Letter to My Twin Boys, One with Down Syndrome, on Their 5th Birthday

What’s the value of Down syndrome?

Can you put a price on the fight?

You become an expert on medical conditions, laws, and inclusion, that keep you up at night.

What’s the value of Down syndrome?

Can you put a price on community?

Joining this exclusive club, the #luckyfew, dashes fears and helps build such unity.

What’s the value of Down syndrome?

Can you put a price on empathy?

You remember your indifference to difference, and realize how your life before him was empty.

Related: What I Should Have Asked When My Son was Born with Down Syndrome

What’s the value of Down syndrome?

Can you put a price on happiness?

You can’t explain fully how such imperfection could make you happy, but looking at us it’s obvious.

Whats the value of Down Syndrome?

Can you put a price on gratitude?

Thank you Troy for being you. For showing us the way. We love you, little dude!

How are you grateful for Down syndrome? How does your loved one with Down syndrome bring value to your life? Share your story below. 

There is a whole tribe of mamas out there who also feel this way about their little ones.  They too are Thankful For Down Syndrome.  Here are a few other bloggers who will tell you why.

Dawn is a homeschooling power mom of six. Her youngest, Cedar, rocks an extra chromosome.  She began her blog Cedar’s Story to change perceptions of Down syndrome. She shares hundreds of diagnosis stories from around the globe, in hopes to show parents that they are not alone and Down syndrome is beautiful.

Read About Her Thoughts on Thankfulness

Be sure to find her on instagram @CedarStory

 

 

 

 

 

Trista and her beautiful Bernadette are showing the world that they are thankful too Trista blogs over at TristaPark.com and says “I created my blog is to process through the journey. The prenatal diagnosis, the heart surgeries, life in general. It’s been a really good outlet for me to process all the emotions and events especially those of this last year. And through that, I hope to encourage other moms with kiddos with special needs that they are not alone and all the feelings are ok!”

READ HER THANKFUL POST HERE

Be sure to find her on Instagram @mrs_t_park

 

 

 

Joy has a unique perspective here too, she has 2 biological children who BOTH have Down Syndrome.  Both Rudy & Desi show their family joy and that God has a purpose for all of us.  Joy and her family also have a passion for homesteading and you can find all of her inspirational posts at The Beanpost Farmstead.

 

READ HER THANKFUL POST HERE

Find her on Instagram @beanpostfarmstead

 

 

 

And lastly…take a look at these beauties:
https://youtu.be/Nhz7_-xdlJc

 

 

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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.

 

 

 

 

 

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Changing Perceptions of Down syndrome through the LEND program

Do you ever wish your child’s doctor, therapist, or other medical professional could spend time with your family to get a more authentic perspective of Down syndrome? Well, you can!

The 15 minutes or hour a week that medical professionals spend with our children in a clinical setting is often dominated by the pathology of Down syndrome. The focus is often on what’s wrong with the child, instead of the child’s strengths and inherent right to access and be included in society.

We volunteered to have these type of professionals shadow us in our home, as well as out in the community. The Leadership Education in Neuro-developmental and related Disabilities (LEND) through Cincinnati Children’s Hospital assigned us to a clinical psychologist and disability self-advocate. You can read about our experience when they visited our home below. This week they came with us to a community event.

Related: Our Family LENDs Perspective to Medical Professionals in Our Home

Our trainees are clinical psychologist, Kaitlyn Eichinger, and self-advocate, Rachel Rice. I love that they have a trainee with a disability participate. Rachel is one of the first self-advocates to be included in the LEND program. It’s a great way for her to continue advocating for herself, and learn how other families advocate for themselves.

Part of the Family Mentor Program requires trainees to think systemically, and communicate the complexity of community
participation by children with developmental disabilities and their families. To give Kaitlyn and Rachel an idea of how we operate in our community, I invited them to our Recreation Center’s Thanksgiving craft day.

I’ll be honest, Troy is a wild card outside of the house. I didn’t have any anxiety with inviting these strangers into our home. That’s because I’m very structured, and Troy knows exactly what to expect. On the other hand, I can’t control what happens outside of our home. Troy does great with routine outings like therapy, library visits, and swim lessons. Every where else can be tricky.

Self-Advocate, Rachel Rice, sits and Clinical Psychologist, Kaitlyn Eichinger, stands as they watch the kids do crafts

Of course, I only got pictures of him behaving well, and actually doing the craft at our local Recreation Center’s “Gobble Fest.” That’s because I was too busy chasing after him to take pictures of him misbehaving. What you don’t see is Troy running for the door every chance he gets, or rolling on the floor (literally). Troy loathes crafts, but he’s actually improved greatly in the past year. At least now he’ll sit for 2-5 minutes and paint.

Related: A Day in the Life of My Son with Down Syndrome

Troy painting a “T” on his turkey

Clinical psychologist, Kaitlyn Eichinger, says it’s important to see Troy in environments that he’s comfortable and uncomfortable in. “As a provider, we only see what happens in the appointment. It is important for us to understand that the parent is the expert. Families are the ones who are with the child everyday living their life. We can make all the recommendations in the world but if its not going to work with the family, we are not actually helping the child or family.  I need to ensure that I understand the family perspective in order to best be able to serve the family and child,” Eichinger explains.

I felt bad that I didn’t get to talk to either Rachel or Kaitlyn very much this time around. Taking three kids out on town doesn’t make for easy conversation. Next time we plan to meet at one of Troy’s scheduled outings, so they can see him in a more controlled setting. Still, I think this experience gave them a glimpse into some of the challenges we face in new situations. All important learning experiences!

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

What do you wish your child’s doctor, clinical psychologist, therapist, or other medical professional new about your child? Do you think inviting them into your home might change their perspective? In what way? Share your thoughts below!