Disability Employment Awareness

Adults with Down Syndrome, Advocate, Community Participation, Disability, Down Syndrome, Employment, Inclusion, Independent Living, Mainstreaming, People with Disabilities 3 Comments »

In addition to National Down Syndrome Awareness Month, October is also National Disability Employment Awareness Month. How appropriate that they occur in the same month!

In the last few years, we have seen many adults with Down syndrome in the workplace. Billy is one of them; he has worked at Food City in Kingsport for over 10 years. He was originally hired by Ed Moore, who has been a manager at the grocery chain for over fifty years. His philosophy is one that might be adopted by all employers.

Click on the image to see the Grown Man Now Interview Series; “Current Employment” is the name of this interview with Mr. Moore.

Interview with Mr. Ed Moore, Food City Manager

Interview with Mr. Ed Moore, Food City Manager

We also see adults with other disabilities in a number of work situations. Employers have found that many people formerly considered unemployable can be valuable members of the work force if they are trained properly and given the opportunity. Our president emphasizes their value to our nation in declaring October  National Disability Employment Awareness Month.

Utilizing the talents of all Americans is essential for our Nation to out-innovate, out-educate, and out-build the rest of the world. During National Disability Employment Awareness Month, we recognize the skills that people with disabilities bring to our workforce, and we rededicate ourselves to improving employment opportunities in both the public and private sectors for those living with disabilities…

— Barack Obama, President of the United States of America

Are you aware of the many adults with disabilities at work in your community?

 

My Brother’s Courage

Independent Living, Parents, People with Disabilities, Siblings 11 Comments »
Billy Schulz Shovels Snow for His Mother

Billy Schulz Shovels Snow for His Mother

The bad weather we have had recently requires determination and courage and extra hard work for many of us. Billy’s service to me inspired his sister, Mary de Wit, to compose this poem for us.

My Brother’s Courage

My brother’s courage grips my heart these ways:
He concentrates on lacing tight his boots,
Assembles hat and gloves and arctic suit,
And with resolve, he steps into the haze.
His mission is to fetch the frozen news,
(This, after warming Mother’s shoulder pad,
Insuring she her phone and coffee had.)
He, cautiously, his icy way pursues.
His life is full of fear. Afraid to fall
On snow — or tumbling from a vista deck—
Offending, being dumb, bouncing a check…
Still every day he faces: smiling, tall.
From his perspective he might call us this:
Retarded, learning slowly who he is.

© 2011 Mary de Wit

Independent Living (Part 3)

Advocate, Community Participation, Disability, Family Challenges, Inclusion, Independent Living, Parents, People with Disabilities No Comments »

The American Disabilities Act proclaims that all persons with disabilities are entitled to independent living. Just as families have different needs and resources, independent living can be provided in different ways. In previous blogs we have examined state institutions, a private residential institution, and the abundant living situation of a young woman making her home with her mother. Another alternative is the group home, designed to serve children or adults with disabilities. Such homes usually have six or fewer occupants and are staffed 24 hours a day by trained caregivers.

Although most group homes provide long-term care, some residents eventually acquire the necessary skills to move to more independent living situations. The development of group homes occurred in response to the deinstitutionalization movement of the 1960s and 1970s. They were designed to provide care in the least restrictive environment and to integrate individuals with disabilities into the community.

Since the passage of the Community Mental Health Centers Act in 1963, grants have been available to group homes. Although state and federal funds continue to support the majority of group homes,  some homes operate on donations from private citizens or civic and religious organizations. Unfortunately, the number of available group homes has not always matched need.

One of the goals of group home living is to increase the independence of residents. Daily living skills include meal preparation, laundry, housecleaning, home maintenance, money management, and appropriate social interactions. Self-care skills include bathing or showering, dressing, toileting, eating, and taking prescribed medications. Staff also assure that residents receive necessary services from community service providers, including medical care, physical therapy, occupational therapy, vocational training, education, and mental health services.

As with any type of organization, some group homes are better run than others. Factors that contribute to group home success are a small staff-to-resident ratio, well-trained staff, and a home-like atmosphere. Before considering group home placement, extensive planning should be conducted. The individual’s strengths should be incorporated into the plan whenever possible. For example, if a supportive family is an identified strength, the preferred group home should be close in proximity to facilitate family visits.

Sometimes, when a group home or other desirable facility is not available, devoted and energetic parents and volunteers elect to build a suitable home for people with disabilities in their families or community. Our next blog will introduce a parent whose efforts are endless in developing an independent living situation for her son and others.

A Change for Billy

Adults with Down Syndrome, Advocate, Community Participation, Employment, Friends, Independent Living 5 Comments »
Photo of Billy Schulz standing in front of Food City in Colonial Heights

Billy Schulz Welcomes You to Food City, Colonial Heights!

Billy has worked at Food City for more than nine years. There are two stores, one on Eastman Road down town and one in Colonial Heights, where we live. Billy started at the Eastman Road store because that’s where he was placed and trained by Good Will. A few years ago, when they built a new store on Eastman Road, he worked at Colonial Heights during the building process. At that time I thought he might stay at Colonial Heights, but no, he wanted to be at the new store! And of course he wanted to work with his dear friend Jonathan.

This summer two things changed. The Colonial Heights store was enlarged and improved and, most meaningful, Jonathan moved away. Billy grieved when Jonathan left and felt a tremendous loss. He began to consider moving to the Colonial Heights store.

We talked with the  manager at Eastman Road, Ed Moore. If you have seen the interview with Ed on our website you know what a remarkable person he is. He agreed to allow Billy to relocate and we talked with the manager at Colonial Heights, who said he would have a place for Billy.

A very positive factor was the presence of Sue, an assistant manager at Colonial Heights, who had worked previously with Billy at Eastman Road, and had wanted Billy to join her. One day Billy said, “Mom, I ready to move to Colonial Heights.” I was delighted at the prospects of having him closer to home, about a five minute drive away, and just hoped he would not be lonely without the friends he had worked with for so long.

Sue and Billy Get Ready for the Day

One day last week, as I drove by to pick Billy up from his new store, one of the young women, a cashier, ran out of the store, calling “Hey, Billy, you forgot to hug me!”

Once again we have a happy man.

The Planning

Adults with Down Syndrome, Advocate, Aging, Auburn University, Disability, Down Syndrome, Family Challenges, Independent Living, People with Disabilities, Siblings No Comments »

A few weeks ago Embry Burrus wrote about The Abundant Life that her sister Margaret and their mother experience. She mentioned a Special Needs Trust Fund, which prompted a question from a follower of our blog. It occurred to me that many people are not aware of the planning that goes into arranging for the future of persons with disabilities. Embry wrote the following article for an issue of the newsletter of the National Down Syndrome Congress and has graciously given me permission to post it here. Thank you, Embry, for your insight and experience.

“What will happen to your sister when your mother dies?” I guess that people began asking me this about 10 years ago, when my mother was getting close to 80. Now that she’s 90, it seems to be the question I get asked when I speak to parent groups around the country. Funny thing is, I didn’t have a clue how to answer that question ten years ago, and it’s only because our family has now gone through “the planning” for my sister that I am able to even entertain the question now. My older sister, Margaret is now 51, and yes, our mother is 90, and yes, they still live together!

“You mean your mother still takes care of your sister?” That’s usually the second question I hear. My reply is, “Well, they take care of each other.” And they did, for a very long time. It’s only been in the last 7 months that my brother and I started looking for someone to help out. And now, we have a sweet lady who comes in 5 days a week to help out with laundry, cooking, cleaning and being a chauffeur to Margaret. Now that Mama doesn’t drive anymore, Brenda drives Margaret to all of her day programs for adults with disabilities, takes them to the grocery store, doctors appointments, or anywhere else they need to go.

I never thought that my mother and Margaret would need help, and I don’t think my mother did, either. To be honest, I don’t think my mother ever considered that Margaret would outlive her – Margaret was born in 1958, with Down syndrome – who would have thought she would still be alive when my mother was 90? But, here we are, and now plans must be made.

It all started when my mother decided that she wanted to leave the house they live in to Margaret, along with her share of the inheritance. She contacted her lawyer and asked him if he could re-write her Will to include these changes. So, my mother, brother and I went to meet with my mother’s financial adviser who then suggested we meet with a trust lawyer. As we sat around the table with the adviser, the lawyer and the trust officer, we learned very quickly that we knew nothing about this whole process.

Our first clue was when one of them spoke up and asked, “Who is your sister’s guardian?” Jake and I looked at each other, and then at mama, who was speechless, and in more of a question than an answer said, “Our mother?” He then replied, “Oh, so you’ve already set up the guardianship?” Dumbfounded, we stared at each other. “Isn’t our mother her legal guardian? She’s her mother.”

“Not in the eyes of the law she’s not. Your sister is past the age of majority and your mother would have to be appointed her guardian.” (These laws may differ among states, so anyone looking into this would need to determine what their state law is regarding guardianship).

So began the lengthy process of establishing guardianship, changing my mother’s will, and setting up a trust (to include the house and other assets) for Margaret. The first step involved my mother’s lawyer petitioning the court in order to establish that Margaret was in fact disabled. About a week later, a police officer came to my mother’s house with a court order for Margaret to be evaluated by a physician who could write a statement describing why Margaret is disabled. During this time, the court also sent one of its officers to interview my mother’s two sisters regarding Margaret’s disability. According to my mother’s lawyer, they do this so that a family member can’t take advantage of someone (or steal their assets) by just deciding to be their guardian. There has to be at least two other people who will bear witness that this person is disabled and needs a guardian.

Once that was completed, we had a court date with the judge of the probate court; Margaret, my mother, her lawyer, my brother and I went before the judge whose task was  to establish guardianship. There was also a court-appointed lawyer present who took Margaret into another room by herself and asked her some questions (I’m assuming just to verify that she was in need of a guardian). The judge asked Margaret and my mother some questions, and the entire process took about 20 minutes. We were then given the guardianship papers, which establish that my mother is now Margaret’s legal guardian (upon my mother’s death, I will be my sister’s legal guardian, although this will involve additional paperwork), and we were informed that we have to submit a report about Margaret’s well being to the probate court on a yearly basis.

Well, we thought everything was taken care of until just a couple of years ago when Margaret, very unexpectedly, received a large sum of money from one of my mother’s relatives. Wow, what a blessing! But, this threw a kink into the works because this money was in a trust, and it was in Margaret’s name. We wanted to make sure that Margaret would have this money for the duration of her life, and at the same time, not lose her government benefits.

I had heard people talk about “Special Needs Trusts,” but didn’t really know anything about them, or how to get started. I contacted the trust lawyer who was very knowledgeable, and she took care of re-writing my mother’s will (again) to include all the important language. As it turns out, many people don’t have a special needs trust due to the fact that they just don’t know they exist. In addition, it is a fairly expensive process to set up, and if there isn’t a large enough sum of money to be protected, it isn’t really worth the time, money and effort. But, in our situation, we felt like it was warranted. I can’t express how much peace of mind this gives me and my family. We know that Margaret will be taken care of, and her assets, along with her government benefits, will be protected. It’s especially comforting to me, as I will be the person taking care of my sister once my mother is gone. I can only hope that I will be the guardian, confidante and lifelong advocate my mother has been for 51 years.

A. Embry Burrus

Auburn, Alabama

Embry is an Associate Clinical Professor in speech pathology at Auburn University. She is also the author of Mama and Margaret, a memoir about her older sister with Down syndrome.

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