Archive for the 'families' Category

The Struggle for the Right to Life and Home Care for Persons with Disabilities

Imagine –  you’ve reached the age when you need help with daily living tasks, and you either don’t want to be a burden on your family or

Not Dead Yet UK

your family isn’t available to help you; would you prefer to have a person come to your home to assist you, or would you prefer to be placed in a nursing home? Most older people dread the thought of being placed in a nursing home. Unfortunately, many insurance companies will not pay for home assistance. And so there is no choice. People with disabilities are in the same predicament. 

But this may change, The Disability Integration Act, which has been introduced in the U.S. House of Representatives, would require insurance companies to pay for both nursing home care and home assistance. It has 232 co-sponsors, but the Chair of the Energy and Commerce Committee, Frank Pallone (D), is blocking the Act. The following article is a call enlist the support of your local U.S. representative, and also  to change Frank Pallone’s mind.

To access the article:

Anita Cameron: Not Dead Yet Supports the Disability Integration Act 

Two more articles by NDY:

The Quality Adjusted Life Year calculates the value of disabled life as a percentage of the value of the life of a non-disabled person. This is blatant discrimination against people with disabilities! It has been rejected by the state of Oregon and by the Affordable Care Act, but New York State has allowed it’s use in a roundabout way. This article explains the situation in more detail:

NDY Demands Prohibition On Use of QALYs To Limit Health Coverage

NDY (Not Dead Yet) is a news source for the Disability Resistance Movement (DRM). One of it’s major goals is to fight against the

Euthanasia advocacy in the halls of government.  Some hospitals have been using their view of “Quality of Life” so that they can save money by “pulling the plug” on people with disabilities. Their argument is that people with severe disabilities do not have quality of life, and are not worth the effort and subsequent costs of the continued use of life-saving treatments.  So when a disabled person’s desire to live is weighed against these costs to the hospital, the pleas of the person as well as those of their family and friends are overruled by a hospital committee! 

This NDY article by Diane Coleman call for this resistance to sustained!

We Call It the “DRM” – And It’s Needed More Than Ever

Welcoming and Incorporating Persons with Disability into the Parish

Summer Kinard, an Orthodox Christian with autistic children, shares 7 ways that parishioners can support autistic people in Church.

To access:

7 Ways to Act on Your Autism Awareness in Church

Faithtree is an Orthodox Christian organization which seeks to help and enable priests and lay leaders for the ministries of the parish church. This article deals with our attitudes toward people with disability and questions we need to ask ourselves in order to prepare ourselves to love people with disabilities and their families, while at the same time beginning our approach by seeing the personhood rather than their disability. If we see them as a helpless charity case they will realize that they are being looked down upon. We all yearn to be treated with dignity and respect, and so do they. 

The article:

How Words Can Make a Difference in Your Church

A post along the same lines, by Ellen Stumbo . . . .

Disability Etiquette When Meeting Kids With Disabilities and Their Parents

A review of a book addressing these matters from Faithtree, by Anna-Sarah Farha

To access:

Removing Barriers: A Step-By-Step Guide to Making Your Parish More Disability Friendly (a Faithtree Resource)

A Short Video:

From the Greek Orthodox Archdiocese Website: A Webinar 

Jad Issa and his son Sader; wheat mill worker and dental school student.

Old Wheat Mill

Jad Issa is a married man with one son, named Sader, who is studying to be a dentist. Jad has worked in a wheat mill for 25 years, six days a week. The family is a happy one; they live in Syria. Jad has Down Syndrome; Sader does not. Here is their story:

From the online magazine Aleteia; by Matthew Green:

Dad with Down syndrome inspires his son — and teaches us all to re-examine our assumptions

Mobile Dental Health Facility at “Ekamuthu” (Harmony) Pre-School. Rambukkana, Sri Lanka.

Sader’s story, with more pictures:

Living with a Father who has Down’s Syndrome

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The Struggles of Mothers with Children who have Disabilities

Mary Evelyn, a Greek Orthodox Christian mother of children with disabilities, shares her stories and her heart. Kate Sytsma

and Ellen Stumbo also share their stories in the posts below, as well as the stories of some other mothers on You Tube videos.

 

To access:

Want to know what it’s like to go out in public when your child uses a wheelchair?

Embracing my daughter’s autism, not overcoming it. (Guest Post by Kate Sytsma)

Don’t Panic

Expectations and IEPs // Episode #16

My son doesn’t want to say hello: disability awareness and taking the day off

You Tube Videos on the same theme:

“… the Mighty One entered, and put on insecurity …”

 Syriac Nativity Icon

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An excerpt from St. Ephrem the Syrian’s Nativity Hymn 11, translated by Sebastian Brock, the distinguished Oxford Syriac scholar (The Harp of the Spirit, Fellowship of St Alban and St Sergius, 1983).

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< from Iconography of the western Syriac Churches

Your mother is a cause of wonder:
the Lord entered into her
and became a servant; he who is the Word entered–
and became silent within her;
Thunder entered her and made no sounds;
there entered The Shepherd of all,
and in her He became the Lamb, bleating as He comes forth.
Praise to You to whom all things are easy, for You are almighty.

Your mother’s womb has reversed the roles:
the Establisher of all entered into His richness,
but came forth poor; the Exalted one entered her,
but came forth meek; the Splendrous one entered her,
but came forth having put on a lowly hue.
Praise to You to whom all things are easy, for You are almighty.

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The Mighty one entered, and put on insecurity
from her womb; the Provisioner of all entered–
and experienced hunger; He who gives drink to all entered–
and experienced thirst; naked and stripped
there came forth from her He who clothes all!
Praise to You to whom all things are easy, for You are almighty.

 Saint Ephrem the Syrian

Holiday Tips for Making Christmas Easier for Special Needs Families K

Soon we will be saying, “Christ is born; worship Him!”

and “Merry Christmas!” 

Summer Kinard has some great ideas for special needs families for the Nativity season:

Holiday Tips for Making Christmas Easier for Special Needs Families

St. Gregory of Nyssa said in answer to the question, “Do you ask why God was born among men? Here’s the reason for God’s presence among men. Our nature was sick and needed a doctor. Man had fallen and needed someone to raise him up. He who had ceased to participate in the good, needed the presence of life. The prisoner was looking for someone to ransom him. The captive for someone to take his part. He who was under the yoke of slavery was looking for someone to set him free.”

Thy Nativity, O Christ, our God,
Has shown to the world the light of wisdom.
For by it those who worshiped the stars,

Were taught by a star

To adore Thee, the Sun of Righteousness;
And to know Thee, the Orient from on high.
O Lord, glory to Thee.

http://www.youtube.com/watch?v=LZl815jFAew

The Special Needs Supermom?

photo by Joe Shlabotnik

I’ve worked in a group home system for 30 years with adults who have developmental disabilities and many times I’ve heard people say to me, “You must be a special person to be able to do that.” It’s not true. Almost anybody could do what I do if they themselves became a group home advisor.  They would learn the kind of patience one needs, and they would learn that the folks I work with all have different personalities; they have their endearing qualities and they have their irritating qualities. And they would learn that they are first and foremost persons, with some disabilities that do not define who they are. They are not a “special” type of person, belonging to a class of people set apart from the rest of us. Just people. Enough about my experience.

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What I do is nothing compared to a mother of a disabled child; I have my hours which I work, and I have days off. These mothers do not have that. Nevertheless, as Mary Evelyn points out in her post, they also are just “people,” with their ups and downs and quirks that are common to all members of the human race. But enough introduction. Mary Evelyn, a Greek Orthodox Christian, can write circles around me on this subject. And she’s funny! Read what she has to say:

The Myth of the Special Needs Supermom

Mary Evelyn also wrote an article for the Huffington Post on this very subject: My Son’s Disability Doesn’t Make Me a ‘Special Kind of Person’

Mary Evelyn also participated in a mothers conference entitled Listen to Your Mother. The conference features writers (who are moms) giving live readings in celebration of Mother’s Day. The readings are featured on You Tube; you can access them at their website: Listen to Your Mother She shares some moments of her life and two You Tube videos of readings by two of her “favorite spina bifida mamas” in the following post: 

Listen To Your Mother 2014: On Motherhood and Disability

And just to emphasize her point, she shares one of her outlets during the difficult times – drinking; not milk, but alcoholic beverages! Don’t be shocked; toward the end of the post she emphatically recommends temperance (moderation). To access:

Disabilitini: for the highs and lows of disability living

On a related note, Ellen Stumbo, a Protestant Evangelical pastor’s wife, has written a post advocating for the inclusion of special need moms’ concerns at Women’s Conferences. She feels their should be workshops designed for the unique needs of these moms at every women’s conference:

Why Women’s Conferences Need to Consider Moms of Kids With Disabilities

 


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