When Beliefs and Reality Collide

By Connie Horn

It has been 24 hours since the phone call.

My grandson was having tests done. I was patiently waiting for the phone call to hear the results. I was also thinking about some of the behavior changes I’ve seen in him over the past few months. He used to respond when you called his name, now I can say his name over and over, with no response. Not even a glance my way. He used to let me hold and snuggle with him, now it is a struggle to get him to hug me or to sit on my lap.

Then the call came.

It is not easy to hear your grandson has autism.

Saying Goodbye…

By Connie Horn

“There is a moral task of caring for someone, and that involves being there, being with that person and being committed. When there is nothing that can be done, we have to be able to say, ‘Look, I’m with you in this experience… right through to the end of it.’ ”

- Dr. Kleinman, Harvard Medical School

Where I work, there is a 24 hour companionship system in place when death is imminent for someone we support. People sign up for times during the day and night to stay with the person so they are not alone during their final days. I am on this list and recently received a call to serve. It turned out to be a person I have known for years and had shared many memorable times.

Accept or Change?

By Ellen Hierl

My family recently went to the movies. As in most theaters, prior to the movie there was the usual announcement about turning off your cellphone and not talking. As the anticipated movie began, several rows behind us, someone kept making noise. It was annoying to say the least.

I couldn’t make out the words but this person was loud and disruptive. After listening for a little bit and debating if I should go let the theater staff know about the situation, I realized that the person making the noise had an intellectual disability. Once I realized this, I became much more accepting of the situation, but should I have?

Soft Skills vs. Hard Skills: What’s Desirable?

By Lynn Wiles
Bethesda Lutheran Communities

Employers describe “soft skills” as those that cannot be taught but that are intrinsic to good workers.

When polled, the three soft skill traits most often identified as “desirable” among workers by almost 1,000 U.S. and Canadian employers were:

• Motivation,the inherent drive one has to work.
• Reliability,equated with doing one’s tasks consistently.
• Dependability,which differs from reliability as defined by employers to encompass consistent attendance and punctuality. It is being able to be counted on.

Can Someone’s Height Be a Disability?

By Connie Horn

In May, I wrote a blog about Equal Access for People with Disabilities.  In the time since I wrote this blog, I have become more aware and honestly looking for, barriers to accessibility for people with disabilities, especially if they happen to use a wheelchair.

I Can Do It!

By Connie Horn

Recently I watched as my grandson was interacting with his mom.  It was one of those mornings where everyone was rushing around trying to get ready for the day. My grandson was told to put his shoes on. He still struggles with putting his shoes on the right feet and it takes him a little longer than most, but he is learning. His mom didn’t think he was putting his shoes on fast enough, so she decided to put them on for him. He pulled them off, looked at her, and in a loud voice said, “I can do it!”

Do YOU still play with blocks?

By Connie Horn

Activity’s purpose is not to kill time,
but to keep time alive,
not to keep a person occupied,
but to keep him refreshed,
not to offer an escape from life,
but to provide discovery of life.

  -Unknown author

Everyone Has Barriers to Learning – So What Do You Do?

By Ellen Hierl

Recently, the Bethesda Institute presented its first webinar, Teacher Growth Series: Who Are The Learners? Part 1. This webinar focused on assisting teachers in serving people with intellectual disabilities. For this first session, we addressed several common barriers to learning and how to teach when these barriers are present. As I prepared for my presentation on limited learning capacity it struck me again that I have much more in common with the people we support than I have differences.

Equal Access for People with Disabilities

By Connie Horn

Accessibility is a very important part of inclusion of people with disabilities. An accessible barrier free environment is the first step toward fulfilling the right of people with disabilities to participate in all areas of community life. Accessibility is a broad term covering all aspects of assuring that people with disabilities can participate and have the same choice everyone else have.

A Few Basic Things

 By David Morstad

Last week in Pittsburgh, Lutheran Services in America held their annual conference. On Tuesday afternoon, the Disability Network of that group sponsored an open forum titled “Long Term Supports and Services,” featuring Dr. Charlie Lakin, director of the National Institute on Disability and Rehabilitation Research.

Listen, or Walk Away?

By Connie Horn

As I was getting ready for work this morning I was listening as my grandson was trying to ask my daughter something. My daughter did not understand what he was trying to say. He kept saying it over and over again, with more frustration in his voice each time. In the end, he threw his hands up into the air and walked away………he had given up. 

Realities of Dementia

By Connie Horn

It is incredibly difficult to watch someone age, especially when they begin to have health issues.  I think one of the worst issues to have to deal with is when someone has dementia. I can say this with complete certainty, because my mom had dementia.

Dementia is such a gradual disease, which, I suppose, is a good thing. As hard as it was to watch my mom slowly fade away, I think it would be much more difficult if she had lost her mental abilities abruptly, without warning. My mom is gone now, but my experience with her dementia has helped me to understand how dementia can impact someone’s life and the lives of their family, friends and others who support them.

Beyond Social Capital – Civic Wellness and Personal Sustainability

By Albert Van Kleeck
Albert Van Kleeck Consulting

During the past several years I have dedicated a considerable amount of time to thinking about and developing different approaches to how we think about our lives and the lives of those we impact and support. I’ve thought about how moving through life one day to the next or from dawn to dusk could be so much easier and make much more sense for so many of us. And I’ve framed this thinking with the terms Civic Wellness and Personal Sustainability.

I haven’t yet come to a decision regarding which of these terms is the best fit for the concept. Perhaps either or both would work, maybe neither one. I’m open to suggestion and all contributions to a wider body of knowledge are always welcome.

Equal But Different?

By Ellen Hierl

It is great to get a discount, just ask any senior who gets their meal at a discount or the AAA member who benefits with reduced admission when on vacation. We like to find bargains when we are shopping and often brag about the deal we got. In some instances, the people we support are given discounts or even free items with the only criteria for this discount being they have a disability. Let me be clear, I am referring to discounts that would not be given to the person if they did not have a disability.

At first glance, I tend to think this is great.

Look For The Meaning

By Connie Horn

I remember the day my daughter came home from school and announced she was “going out” with Brian. The conversation we had afterwards went something like this:

“Going out? Where are you going?”
“Nowhere.”
“I thought you just said you were going out with Brian?”
“I am.”
“So where are you going?”
“Nowhere, I’m going out with him.”

Restraining Human Rights

By Connie Horn

Restraint and seclusion practices are happening in homes where people with intellectual and developmental disabilities live, and also in our schools. Advocates and their families are starting to speak up and demanding restraint and seclusion practices come to an end.

You Are the Service

By Albert Van Kleeck
Albert Van Kleeck Consulting

When you are asked to think about “best” or “promising” practices in service delivery, what comes to mind; Personal Futures Planning, Person-Centered Thinking, Recovery, Personal Outcome Measures, all of the above? For most of us these approaches represent best practices in learning about what is most important to the people we support and in developing a good person-centered plan that will provide what each person needs and wants to achieve his or her goals and dreams, to own her life and become less reliant on the service system.

And, if you named any or all of these approaches as best practices you would be correct. However, there is more to the story. There is an element and an approach, or a way of thinking about services and supports that we don’t often hear anyone speak about. You are the service!

What Can You Do?

By Connie Horn

In honor of Developmental Disabilities (DD) Awareness Month I encourage everyone to learn more about individuals with intellectual and developmental disabilities. DD Awareness Month not only offers an opportunity for increasing education, awareness and community inclusion, but it also paves the way toward improving the quality of life for people with developmental disabilities. It is after all, often a lack of knowledge as well as attitudinal barriers that often result in isolation of citizens and disconnection of a community.

There is a lot you can do to raise awareness about intellectual and developmental disabilities (I/DD) in your community.

Don’t Just Sit There

By Ellen Hierl

As we begin Developmental Disabilities Awareness Month, I was reminiscing about how far we have come in the 20 years I have worked in this field. I have actually spent all of those years with the same organization. When I started, I remember the long-term staff telling me about how services were when they started in the field and how far we had come. Frankly, some of what they told me seemed shocking at the time. Well, I am now one of the long-term employees and I have my own stories to tell. 

Supported Employment

By Albert Van Kleeck
Albert Van Kleeck Consulting

Do you ever have the feeling that you have been spinning your wheels for the past 25 years?

During the last several months with the start-up of Van Kleeck and Associates, I have been asked by several organizations to assist with the development of service options. Most of the conversations have been focused on assisting with the development and implementation of Supported Employment services so people can achieve their dream of a community-based job. I have been more than happy to provide whatever is needed to accomplish this goal. Indeed, my roots in this field are firmly planted in Supported Employment.

Role Reversal

By Steve Ristow

 “Who dies at the age of 35?”

I can vividly remember asking this question in amazement after my parents described the life expectancy of my best friend with Down syndrome. Much has changed since that conversation some 30+ years ago.

Medical advancements, better daily care, greater understanding, social integration, and other environmental factors have contributed to the lengthening of the life expectancy for people with developmental disabilities.  At Quiet Waters Outreach, it is not uncommon for us to serve people with developmental disabilities (DD) in their upper 60’s…praise God!

However, with any advancement comes new and challenging trends.

Guardianship and Rights

By Connie Horn

Sometimes people with intellectual and developmental disabilities need assistance with their decision making. Generally a guardian ensures the person is living in the most appropriate, least restrictive environment, has their medical needs met, and is treated with dignity in their life.

Why Not Dick or Jane?

By Ellen Hierl

Client, consumer, resident, patient, individual…all of these are labels. Why is it that we feel compelled to use labels to describe the people we support? Why not just use the person’s name? It seems pretty easy to use names. Don’t we do that with each other all the time? Well, frankly, no we don’t. 

Person-Centered or Person-Directed?

By Kelly Thran

“Person-centered” and “person-directed” services are value-based approaches to providing a system for people who require the support of others to live a rich and fulfilling life.

The terminology is often used interchangeably.  I suggest that there are subtle, yet distinct, differences between “person-centered” and “person-directed” that should not be overlooked.

Regulating Independence

By Connie Horn

According to the Wisconsin Community Based Residential Care (CBRF) fire safety requirements under DHS 83. 47 2 (d) fire drills, fire evacuations drills shall be conducted at least quarterly with both employees and people supported. Fire drills are a common occurrence in most homes because of the regulations they fall under.

I was working at a home, and we had just finished lunch. After lunch, everyone was busy clearing the table, putting dishes in the dishwasher and in general, cleaning up. I decided this was a great opportunity for a fire drill, so I pulled the alarm. Everyone stopped what they were doing.  They quickly exited the house and went to the meeting place.

Anyway, that is what I thought!

Quality in Services for People with Intellectual and Developmental Disabilities

By Cathy Ficker Terrill

Throughout the United States, there has been a shift in the manner in which people with disabilities, service providers and accrediting bodies are defining quality. The current national and international trends move beyond compliance to established processes to redefining quality within a context of community inclusion, rather than on programs, services and organizations.

Christmas Memories

By Ellen Hierl

Fall is absolutely my favorite time of year.  I love grabbing a pair of jeans and a sweatshirt and heading outside to enjoy a brisk Wisconsin day.  I think part of the reason I so enjoy fall is that it has so many pleasant memories for me.  Many of those memories are attached to my father.

As a young child I would tag along with him through the fall fields, a dog leading the way as we went bird hunting (I had a toy gun in that picture) or I’d hang out on the farm as he helped bring in the crops.  As I got older, I’d spend time deer hunting with him during the fall. Even his birthday occurs in the fall.

But since my Dad has passed away, I also find fall to bring some sadness with it.

I miss those times spent together with him and they are so linked to this time of year.

Transforming The System

By Kelly Thran

Traditionally, services for people with intellectual and developmental disabilities have been designed around a system that was created to meet the needs of funding entities, regulatory compliance and political agendas.

If you were a person with an intellectual or developmental disabilities, seeking residential services, you may have  been “placed” in a state-run institution, a privately-run institution or a group home “slot” that your “team” determined was appropriate for you. 

Connecting the First Level Leaders

By David Morstad

Every agency in our field has them, the people upon whom the success or failure of supports seems to depend.  Surprisingly, I’m not talking about direct support staff, though they are certainly critical.

No, I’m referring to those who supervise direct support staff, monitor individual plans, provide job training, etc. I’m talking about people with job titles such as Program Manager, Supervisor, Lead Staff, Case Manager, QMRP/QDDP, etc.  People who might be called the ‘first level of leadership’ in any organization.

Services or Supports?

By Kelly Thran

In working with people with intellectual and developmental disabilities I find that we use the words “support” and “services” interchangeably when describing how we are paid to interact with people.  These words have very different meanings, with a wide ranging influence in the quality of interaction.  They may hold even more meaning and influence when working with adults who rely heavily on others to navigate their day.

That Which ‘Must be Honored’

By David Morstad

Nearly two years ago The Arc and the American Association on Intellectual and Developmental Disabilities (AAIDD) released their joint statement on Spirituality. Among other things, it states:

“Spirituality, spiritual growth and religious expression that respect a person’s history, tradition and current preferences are rights that must be honored by service systems and faith-based communities, as should the choice not to participate.”

Why did they create the statement?