The Pure in Heart

Adults with Down Syndrome, Advocate, Community Participation, Down Syndrome, Education, Family Challenges, Inspiration, Parents, People with Disabilities, Special Education, Western Carolina University 3 Comments »

On April 9  Billy, Mary and I spent a delightful afternoon with a group called The Pure in Heart,  at Longs Chapel United Methodist Church in Lake Junaluska N.C. This long standing church/community group is led by Jackie Spencer, a former student and dear friend of mine.

Billy Schulz, Jane Schulz, Fred Spencer, Jackie Spencer reunite for the Pure in Heart

Billy Schulz, Jane Schulz, Fred Spencer, Jackie Spencer reunite for the Pure in Heart

Jackie describes Pure in Heart as  “a group of adults who share Acts 2:42 dinner together, followed by a variety of activities with emphasis on fun, fellowship, and service. We work around and from our challenges, knowing that God’s strength is evident in how He enables us and calls us to help one another.”

What a reception we received from the Pure in Heart! Thank you!

What a reception we received from the Pure in Heart! Thank you!

The Pure in Heart includes persons with disabilities, their parents, teachers, and friends. They welcomed us with open arms (literally), listened to our stories, and shared their concerns and victories. We had revised our presentation to reflect changes in Billy’s life and my awareness of what I have learned from him. We called it Lessons From Billy.

Chris, who spontaneously led the group in the Pledge of Allegiance, is a photography enthusiast.

Chris, who spontaneously led the group in the Pledge of Allegiance, is a photography enthusiast.

A surprise feature was the Pledge of Allegiance, led by Chris, one of the younger members of the group. Following the presentation, we enjoyed delicious refreshments and energetic conversation.

The philosophy of The Pure in Heart was evident:  “Every person on earth has special needs. Some needs are more evident than others. Within our church, we all find love, acceptance, and a little  extra help when needed. Every person also has special gifts and our friends’ gifts are well worth discovering.”

A few days later we returned to North Carolina to speak with students and educators at Western Carolina University. Dr. David Westling has invited us to join his students for several years and we always enjoy being there. This time Dr. Valerie Mazzotti welcomed us into her class (SPED 413) for our presentation. Afterwards we were treated with a lovely meal and a conversation full of ideas for the future of education! It is such a privilege  for Billy and me to return to a place we worked and loved,  to see our old friends and to meet new ones.

WCU's Dr. David Westling, Dr. Valerie Mazzotti, Dr. Lisa Bloom, and Dr. Jane Schulz

WCU's Dr. David Westling, Dr. Valerie Mazzotti, Dr. Lisa Bloom, and Dr. Jane Schulz

Both of these events, with unique audiences, illustrated the positive contributions that many people are making to ensure that persons with disabilities have opportunities to develop into happy and productive adults. Thank you, Jackie and David, for your dedication and passion for what you do and for whom you serve, and for  your gracious hospitality.

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.

Abundant Life by Embry Burrus

Adults with Down Syndrome, Advocate, Aging, Auburn University, Family Challenges, Mother of an Adult with a Disability, Parents, People with Disabilities, Siblings 82 Comments »
Margaret, Embry and Mama at the Beach

Margaret, Embry and Mama at the Beach

Jane has graciously asked me to share with her readers how my family is caring for my older sister, Margaret, who has Down syndrome. It’s one of the most common questions that people ask me when I go to speak to parent groups and seminars: “What will happen to your sister when your mother dies?”

To be honest, it’s a fair question. My mother is 91 years old, so folks wonder, how could she possibly still take care of an adult child with Down syndrome? And the answer is, it’s now a group effort.

Our father died in 1983, and since then, our mother has been Margaret’s confidante,  caretaker, and as always, her lifelong advocate. Even when my father was alive, Mama was the one who took care of things; especially where Margaret was concerned. She continued to drive into her late eighties, and took care of all the household duties and bills. She drove Margaret to all of her social events, to the grocery store, to church, and even on short trips. People are always amazed when they meet her, marveling at how active, funny and engaging she is at 91 – she is truly an amazing person!

But, things have changed around their house now. Mama knew she needed to stop driving, especially at night, and the household chores were starting to overwhelm her. I called one night at around 8:30, and they were just sitting down to supper. When I asked Mama why they were eating so late, her response was, “I don’t know, I just couldn’t get it together.” I knew it was time to get her some help.

My brother and I talked, and decided that we needed to find someone who could help out on a daily basis with cooking, cleaning and driving Mama and Margaret to their activities and appointments. We were blessed to have a friend recommend someone, and now we have two wonderful ladies who share the duties. Brenda comes every morning, drives Margaret to her activities with the recreation department, and then comes back to the house where she cleans, fixes lunch, does laundry and takes Mama to the grocery store, the bank, or wherever she needs to go. Since Brenda already had a job in the evenings (taking care of another elderly person), we needed to find someone else who could work a few hours every night. Brenda knew of someone in her church that was retired and looking for a part-time job, so she recommended Marion, and she comes in Monday through Friday from 5:00 – 8:00 p.m. She makes dinner, cleans the kitchen, and takes care of anything that needs doing before they go to bed.

Mama and Margaret are still able to manage things at night, and on the weekends, as I usually go over on Sundays to spend the day with them and take care of the bills. I know there will come a time when they will need full-time, seven day a week help, but for now, our set-up works just fine.

I realize that I still haven’t answered the question of what will happen to Margaret when my mother is gone, and the truth is, we don’t have “a plan” in place. My mother and I have discussed it, but it’s difficult for her to talk about. I don’t think my mother ever considered that Margaret might outlive her. She feels responsible for Margaret, and doesn’t want my brother or me to “have to worry with it.” I have tried to assure her that this is no burden for me, and that I am honored to take care of Margaret; I only hope I can do as good a job as my mother has.

Two years ago, we set up a Special Needs trust for Margaret, so that any assets she has will be protected and not cause her to lose her government benefits. We also established guardianship so that I will become her legal guardian once my mother is no longer living.

What I hope for is that Margaret is able to continue to live in her home (which will go into the trust once my mother has passed on), and we will have wonderful people like Brenda and Marion to help out. Since I will be Margaret’s legal guardian upon my mother’s death, those decisions will be left up to me. My plan is, first and foremost, to do what’s best for Margaret, and to make sure that she continues to lead a happy and fulfilled life.

A. Embry Burrus, MCD, CCC/SLP
Associate Clinical Professor
Department of Communication Disorders
Auburn University
E-mail: burruae@auburn
Author: Mama and Margaret

Have you wondered who would take care of your family member with a disability? Do you have a plan? We welcome your suggestions and questions.

Independent Living (Part 2)

Community Participation, Disability, Diversity, Employment, Independent Living, Parents, People with Disabilities 10 Comments »

With the growing dissatisfaction with large state institutions, there has been a vast depopulation of large state facilities between 1990 and the present time. Several states (Alaska, the District of Columbia, Hawaii, Maine, New Hampshire, New Mexico, Rhode Island, Vermont, and West Virginia) closed all their large state facilities for persons with developmental disabilities. In addition, 27 other states reduced their large state facility populations by more than 50% over this time period.

While there are a number of alternate living situations which we will explore, there is still a need for residential placement for some persons, and for many this is a good solution. Let me give you an example.

Frances lives at Annandale Village near Atlanta Georgia. Her mother, a widow, lives about an hour away. Frances has an intellectual disability and requires close supervision. Her mother realizes that this will be a lifelong condition for Frances, and she wants to be sure that her daughter will have a good life even after her mother dies. They investigated a number of living situations and found that Annandale would meet their needs.

The slogan for Annandale is: “Their community..with our help.” The residents (referred to as “villagers”) form a family-like community engaged in work and play in a safe, sheltered home. Begun in 1969 with 8 residents and a staff of 4, it now has 95 villagers with a staff  of 88, with 15 residents in a special care unit and 15 in day care. The community is comprised of 10 residences, with choices of private apartments, semi-individual apartments, cottages and a 24 hour special care facility.

Annandale has 3 program tracts, based on individual needs. The programs include vocational opportunities, both on campus and in outside business organizations. The villagers market art work, have regular exercise and activities, and cultural opportunities in the area.

Frances visits her mother from time to time, but calls Annandale home. Her mother also visits Frances and has the peace of mind in knowing that she will have that home as long as she lives. You can see pictures of Annandale on their web site: www.Annandale Village.com.

There are a number of good residential facilities throughout the states. I don’t know the cost of the care but feel sure that this is a good solution for some families.

In future blogs we will discover how other families and agencies provide independent living for persons with developmental disabilities.

Let us know what you think and share your discoveries.

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