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Among those of us who care deeply for and about people with developmental disabilities, I hope to hear emerge a new voice, ours, rising together for the benefit of all, harmonizing with reason, respect and hope, and transcending divisions, giving birth to a new era of creative cooperation.

Toward this potential, DD EXCHANGE is for conversation, civil sounding off, sharing of stories, experience, information, resources, and inspiration, giving and receiving support, and creative problem solving.


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Sunday, March 14, 2010

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

2 comments:

  1. Priorities are certainly one component to the allocation of state financial resources to support the vulnerable. However, information is also key.

    In today's world information systems help to manage the logistics and route supports where needed (e.g. ProviderOne). Part of the logistic difficulties in DSHS are separate systems used by each administration. These systems are used for determine program eligibility and distributing financial supports; although many systems do not inter-operate with one another.

    To help better manage and distribute financial resources in an equitable manner, better information systems and uniform business practices to determine program eligibility and the routing of financial supports are needed.

    Adding to an already complex financial task, different programs that are partially funded by federal dollars obscure how best to equitably distribute funds. Consider the Medicare ICF-MR program. Medicare provides matching funds to states for each person provided care in these facilities. This raises the question as to how much of state financial resources should be provided for individuals served at institutions compared to those is community programs. Why is there a financial disparity between the various programs of care?

    Perhaps the funding should be based on the individual and their unique needs, rather than determine the distribution of state funds based on location. Have the money follow the person and the amount based on a uniform set of criteria for people that share similar psychiatric and medical characteristics. In simple terms, people that have the same impairments receive the same funds regardless of where they are. People receiving those funds (or their guardians) should have the choice of which services they would want to use with the provided funds, be it institutional or community programs (e.g. SOLAs).

    ReplyDelete
  2. This is a lot of food for thought! It is easy to go straight to what seems to be the bottom line: a sort of apples-to-apples equity of support, based on defined conditions. It sounds like an ideal goal; plus the inherent philosophy of "choice" is supported by the Olmstead Supreme Court decision that requires choice of community or "institutional" residential supports, the CMS (Centers for Medicaid and Medicare Services) rulings that required Washington State to open admissions to the RHCs, and also, in Washington State, the conclusion of the Stakeholders Workgroup that the marketplace should be allowed to work relative to "community" vs RHC placements. All three were founded on the premise of "choice," but, of course, none required a specific financial management system to support it.

    As I look at the needs of such a system, I wonder how to assure such features as "safety net" that RHCs currently offer to "community" residents, how to solve what I believe to be a huge deficit in "community" Quality/Safety Assurance. Also, planned respite. And transportation. How about the assurance of the availability of infirmary level medical care by dd specialists and therapies specially geared to the population of people with not only physical and psychiatric/psychological, but severe cognitive and behavioral disabilities, too. Ideally, non-traditional methods could also be provided. I bet this is but a tiny list of features that collectively we could develop. How could such features be built on the concept of funding equity and choice between RHC and "community" services? How could this work?

    I would love for the author of the idea to continue and for others to join in the discussion.
    Saskia

    ReplyDelete

Comments are encouraged. By sharing perspective, personal experience, both positive & negative, ideas, resources and support, readers can enhance each others&; understanding and we will all benefit.