********VISION: DDexchange********

What Would You Like?

I am not sure how many are visiting here, so far. Probably, I will need to repeat this, or variations of it, as our numbers increase.

My hope for Developmental Disabilities Exchange is to establish a dynamic conversation, maybe many, on the subjects of improving what is available for people with developmental disabilities.

In our state, much focus has been on a long-standing, limited and very limiting debate as to whether state-run campuses known as "residential habilitation centers" (RHCs) should be allowed to continue to exist. I think it is a very sad state of affairs that so much effort goes into closing excellent facilities that are needed and preferred by their residents and their representatives. But, that debate is NOT what this blog is about.

It is about everything else that pertains to the subject of life-styles, choices and resources for people with dd, their families and communities.

Discussing what is not optimal about any given service delivery system, living arrangement or other support, from the perspectives of it's consumers, service providers, direct caregivers and teachers and neighbors, alike, is encouraged when it is framed as a request for constructive ideas for improvement or a clear request for empathetic support. Conversely, in the interest of avoiding becoming a battlefield, taking pokes at other systems and resources with which one has no direct experience is discouraged. Praise of something you, your loved one with dd or your clients/students experience as working wonderfully is very much encouraged.

Participation of members of the larger communities to which people with dd belong is also encouraged. Many of us are so used to considering the needs of people with dd that we can fail to take into account how the needs of others are impacted by our needs or those of our loved ones. I think it is important and helpful to see our lives & those of folks we may represent or provide service to in the context of the larger community.

Sharing of news & giving/receiving support is part of every community; I see ddexchange participants, collectively, as having the potential to become a very rich community, nationwide.

Ultimately, this blog can serve to broaden all of our perspectives on what is needed and what is possible to achieve by and on behalf of people with dd. We could even come together, eventually to create models that do not exist yet, models that optimize people's ability to receive help and support that is geared to their choices and the needs they or their representatives identify for them. Who knows, with the comprehensive reach of the internet, we probably even have among us people with the ability to create new financial systems to support innovations we co-create!

So, here we are at the beginning. We can go in any direction we choose, build on each subject introduced. I have been thinking about how to make this happen & I am wide open to ideas.

What can you envision? What subjects are of interest to you? What needs do you, your loved ones with dd or your clients, patients or students have that could use some fresh air and discussion, maybe, ultimately, improvement? Or what else would you like to share?

I will be moderating, at least for a while. Progressively, we will have other primary bloggers, possibly in time, each moderating for a subject or on behalf of groups of people whose needs are similar. I am not sure, yet, as I really want the blog to represent what is wanted by participants. Also, the format allows for "pages", so when there is enough participation about different subjects, there can be different pages for each. For now, to respond to something someone else has said, just write in the "comment" box, below each blog section (click "comments" to open the box). When you have something to share that is not a direct comment to something I or someone else has blogged, just send it to me by email at ddexchanges@gmail.net .

Also, it would really help the process if you would sign up to become a member so we could have a sense of how many people are participating. Even if you don't comment, it would help us know that we were being read.

Thanks,
Saskia Davis

Expanding Persective

Recently, I started this blog, hoping that conversation among people with their differing needs & experiences would lead to mutual caring & support &, eventually, to mutual, creative solutions to the problems we face.

Care for people with dd is very expensive, but thinking back over the many years I have been involved, assuming there is not enough money for this or that only assures that the thing cannot be afforded. We must go for what is best for the individuals who need the services. That is where the progress always has been made.

Where my sister, Kathy, lives, all her needs are provided for, which is a wonderful blessing. I know that I would burn out in about 6 months if I tried to take care of her, myself, even with help; and even then, she would suffer losses, for it would not be possible to provide from home all of what she needs. Her needs are just too intensive. If there were a situation in the "community" that could meet them all, it would be hard to justify the extra money it would cost when there are so many others who also need services.

This evening I was contrasting her living situation with another I encountered a while back. Kathy's Fircrest home is brightly lit, uncluttered and spacious with communal living room and activity/dining room shared bathroom and wonderful bathtub with excellent access, and semi-private sleeping areas for her and her 6 housemates.

The other situation I encountered as I was leaving from a meeting in a small, western Washington town. I was just approaching the freeway on-ramp when I noticed a dog trotting along in the same direction. I stopped & enticed him into my car. Finding that he wore a tag with an address, I took him home. The house to which he belonged was more on the order of a shanty. The property had not a plant nor blade of grass growing on it, just a wide expanse of hard dirt. The house, badly in need of paint, appeared to be only about 400 square feet.

A young man came to find out what I was doing with the dog and gratefully accepted custody of him when I explained. He said neither the dog, nor the house was his, but that the owner, his foster mother, was in the hospital, having taken a fall. He asked me inside so he could take my name and address for her. Inside was clean and old-fashioned homey, with lots of family photos on the walls of tiny, crowded rooms, the ones I saw, anyway. The young man chatted, praising his foster mother to the skies for having raised him and several other foster children, some of whom he called "mentally retarded," and all of whom he claimed as "family." He explained the children all had grown and were gone, now, didn't say where or how they were doing, except for one he said had gotten into trouble with the law. Most of his conversation was in praise of his foster mother whom he knew as the biggest hearted, most wonderful woman, ever. As I looked at the tiny living room, I wondered how she had managed with so many in such modest circumstances.

And I wondered how typical it was for DSHS to support living situations such as this one. I thought about the love the young man had experienced, pondered the struggles the woman must have had to keep it all together. Listening to the young man talk about his former life in that house with it's owner and all the children she took in who might not, otherwise, have had the love she had to offer, my perspective was expanded.

When I think of this, now, it helps me understand how there can be the sense of injustice that some express about the resources that are spent in residential habilitation centers (RHCs) for people like my sister. Then, I think about the fact that she and those with whom she lives need every resource that they are provided. They should not be deprived of what they need because of the needs of others. Instead, we all should be working toward more for those who receive so little or nothing at all.

I am convinced that in our society, there is plenty of money and plenty of resources. What is missing, rather than money, is the will to prioritize it's use for these purposes. It is there that we need to be addressing our collective attention.

As this blog grows into the inclusive vehicle that I envision, I hope to see us brainstorming with crackling creativity to find or develop the financial where-with-all to meet the needs of everybody. If this seems like pie-in-the -sky, perhaps that is what it will turn out to be; but for certain, nothing new or more creative will happen without some new kind of effort and thinking; so I invite you to come along, share your experience and perspective so others have a sense of who you are and can begin to see through your eyes. If enough of us do this, a sense of "our community" will emerge. From there, we could surprise ourselves with what we co-create.

I surely hope you will join in. I just know you have something very unique and special to share, even it it is something you are used to and, so, take for granted. How about it? You can click on "comments" and write or paste-in your contribution, or you can email it to me & I will post it for you. Saskialucianow@gmail.com
Together we are Awesome......Saskia

Developmental Disabilities Exchange:

Everyone's Input is Welcome

This evening, I finally can invite everyone to participate in this blog. Until now, the "comment" section has been locked; and it seemed wrong to invite you to conversation and then prohibit it, so I've been waiting. I am new to this business of blogging, so I'm just feeling my way along.

Part of my background is as a facilitator of peer support groups. Our groups were premised on the belief that when each person truly feels heard, s/he has or can find all his/her own best answers. I am also depending on that premise as I begin this blog. Additionally, I am depending on synergy, the concept that the creative sum of a group is greater than the simple sum of it's members. We all have experience to share for the benefit of others. All of us have felt frustrated and mired, at one time or another, by the system. We can use this blog to ask others how they got past the same hurdles or strategize to do it together. Among us we have resources we perhaps do not even realize others are aching to learn about. And we all have experience that can help others broaden their perspective.

There has been so much division in our collective of dd advocates, caregivers and families, I hope to see healing of that rift. My vision for this blog is open sharing and caring, passionate dialogue which, while acknowledging differences, also respects them, bright, new ideas, and, eventually, a sense of safety, belonging, trust and mutual support: a sense of community and discovery of creative solutions.. Conversely, it will not be productive to disrespect the choices others have made for their loved ones or cast blame. People who feel the need to do that are encouraged to try on a sense of curiosity and interest, instead. It is amazing how transforming it can be when curiosity and interest can replace judgement. It takes real work, sometimes, to accomplish it, but it is always worth the effort.

Thanks for visiting. Please explore the site & leave something for us in the comment box. Your comment on something in the blog, a resource recommendation, your story, your self introduction, a need, whatever you are inspired to write.. It will help me to know you and it will give others courage, too. Thanks. "Comment Moderation" is turned on, but unless it is spam, or something truly crude or rude, I will post it as written. Saskia