Kathleen’s speech for the PHA legislative meeting this weekend

As some of you who attended this year’s legislative meeting this weekend are aware, we ran short of time so I was not able to deliver my speech. I think it does include some key elements that were a part of today’s meeting. Therefore I am forwarding it on in the hope folks will take a moment from their busy schedules to read it. It does not capture everything but it does summarize much of what was discussed and it also points to the immense task that still remains-watching over the community care system.
Enjoy
Kathleen Miller, PHA – Co-President

March 2019 Legislative Event

We are now rapidly nearing the end of the first quarter of 2019 and there is much to be thankful for!

The good news is most former residents of Sonoma Developmental Center are in now well-served in lovely homes, by able staff.

I want take a moment to personally thank our legislators and a special thanks to Director Bargmann!

When the home my son was to be moved into installed a backyard consisting mostly of woodchips, she requested it be improved and upgraded into much more welcoming and comfortable gathering place for clients and staff alike.

And so it was.

And as a result, the quality of life for everyone living there and the work experience of those who assist them is enhanced.

It is so important that our legislators – and the Department – hear from us when things go well.

Another example is the new clinic in Santa Rosa – for those who have access to it.

We want our guests all to know how much the decisions you make matter to us and to those we love.

Now, after nearly 13 decades Sonoma Developmental Center has closed its doors.

There will never be another place like it.

No matter if you saw it as a unique, peaceful, and caring place – or as an expensive relic – one cannot help but feel a certain emptiness in the absence of a constant, reliable, and quietly beautiful location, where so many lived over so many, many years.

And for individuals like my son and others, it was a place of refuge and of last resort.

It is also important to understand there is an important legacy that does not cease with SDC’s institutional closure.

Two aspects come vividly to mind:

We are now joined with local voices asking that SDC’s historic cemetery – where thousands are at rest – be treated and respected as the sacred place it is.

 Department cannot or will not step-up and see to it that its grounds are surveyed, cleared and all those buried within them are named in remembrance – then provide us community access and we will see to it.

There is also Camp Via – unique in the access it once provided the disabled – including the severely disabled – to the wonders and tranquility of the out-of-doors.

In our view, Camp Via must be reborn, redesigned, and rebuilt and revitalized to 21st Century standards and then reopened to many including those individuals with disabilities.

These are two obvious elements of a legacy which must be honored!

So- going forward, it is imperative that we make sure you hear from us when things go well and make that recognition clear for all to see.

But we also need to come to you when we have concerns. The system of care will be impacted for generations by the closures and issues will arise.

For example it is a major concern for us that so many have not survived the SDC closure. It has taken the clarity of data to show how many died and that data is the basis for our demand that an outside agency take a look, explore contributing factors, and make clear recommendations. This must be done in the effort to slow SDC deaths and also to prevent similar numbers happening during future closures or transitions.

Dental care is another significant example.

Access to good dental services is a problem for many in our society, but for the disabled, especially those who require sedation or anesthesia, the wait can be much too long.

And you may hear concerns about day programs, a lack of recreation opportunities, or how many disabled have no regular access spiritual care.

And you may also hear about how some Supported Living Services providers are strong and good, while others should be closely scrutinized – even shut down, based on histories of repeated and serious failures.

So, no doubt, over time such concerns will arise.

It is also true that many families now care for their disabled loved ones at home.

Trending thought, opinion, and attitudes support this and suggest people with disabilities should be part of a family and by extension, embraced within their local communities across all levels of need.

And this is a most beautiful and loving thing when it works and goes well.

So we are thankful the days are now behind us when families were told they should send away a special and different child to a large state or private facility.

In many cases, especially when a disability is mild, this is the most appropriate course.

But what about families who – for reasons of physical or emotional demands – struggle to care for a seriously disabled family member?

What happens when all the able adults in household must go off to work, sometime to multiple jobs, just to make ends meet?

Or what happens when ageing parents experience increasing medical issues of their own?

And what about families dealing with a disabled loved one who, under stress, becomes aggressive, even violent?

When families choose home care, then they should absolutely be supported in this: A most personal, committed, and righteous choice.

But those who need a different path may find but few options, or none at all, leaving them trapped in quiet desperation.

That reality is decidedly not thing of beauty.

These families need our support so they know they are not alone.

No, we do not raise issues to make ourselves difficult, although at times it may seem so.

Instead, this advocacy in favor of critical, quality services is our reason for organizing ourselves, for standing together.

We know how much we depend on you: our legislators, the Department, its regional centers, and their providers.

What you do is essential to us and we know the heavy responsibility the choice to work with our loved ones entails.

Thus, if we have any one most important message for it is to let them know how much what they all do matters to us.

But what we do matters as well.

It was the families and friends of the disabled who advocated Sonoma Developmental Center into existence; that fought for the Lanterman Act, and much, much more that is sometimes taken for granted.

It is these friends and families – along with self-advocating communities of the disabled themselves – that must continue to watch over our system of care in order to help make it the best that it can be.

Because when the system of care works well, our society benefits as a whole.

But when existing services fail real people suffer.

So let us all be vigilant together and continue to work together in the spirit and purpose of a better California for all.

Thank you.

Kathleen Miller, PHA Co-President

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