The Arc of King County’s Comments on the Feasibility Study for the Closure of State Institutional Facilities

On behalf of The Arc of King County, thank you for the opportunity to review and comment on the draft report regarding the Feasibility Study for the Closure of State Institutional Facilities.

We appreciate the work of the consultants who prepared the report, and the Legislature for funding the 11^th study of this issue of where and how individuals with developmental disabilities, who are currently institutionalized, might best be served.  The Arc of King County mostly supports the RHC Commission Report of October 14, 2009.

Our comments are as follows:

We agree that the overall direction of most of the recommendations acknowledge the challenges of addressing the political and programmatic concerns surrounding this issue.

As a collective, we represent thousands of individuals with disabilities and family members throughout King County, the majority of whom believe that people with developmental disabilities should live in ordinary neighborhoods, go to local schools, and enjoy community activities.  We further believe that the state has an obligation to support individuals and families according to their individual needs.  We believe that this can best be accomplished in community settings, such as family homes, or a home of their own, designed to meet the individual’s unique needs and desires, as the majority of people with DD are currently experiencing much success living within their communities.   We further believe that it is more cost effective to do so.

We support the study’s conclusion that our state is well behind the national trend to close institutions and support people in their communities throughout the state.  The fact is that we are 36^th in overall spending on individuals with disabilities and 38^th in its dependence on state run RHC’s.

The report is, however, misleading in its assumption that individuals with the most significant clinical needs should be supported in the RHC’s, nursing homes or community settings run by state employees.   The majority of people who have the most significant needs are already living in the community, either in family homes or in Supported Living programs, throughout the state, quite successfully and at a much lower cost to the state.  It is not necessary to transfer state employees to community settings.  We feel this perpetuates the notion that individuals with significant challenges need this kind of staff to support them, when it is, frankly, not true.  We suggest you recommend a more thorough assessment be implemented to determine who really has such complex medical needs that couldn’t be served by current Supported Living providers, who are successfully serving people with very complicated needs.

I am fully supportive of the need to develop the current infrastructure in the community and to increase the dollars that go to the hundreds of privately operated community programs that serve thousands of individuals.  One of the main concerns families have is the high turnover rate in these community programs.  These programs provide necessary, high quality services, but provide low wages to their employees.  In study after study that the state has conducted, they have shown a direct relationship between low reimbursement rates (low wages) and high turnover rates.   The state must, through adequate reimbursements, demonstrate to families their support of community based care.

We strongly recommend that the clinical services currently being offered in the RHC’s be transferred to DDD regional offices, and be offered to all people with DD living in the community.

We are concerned about the study’s reference to deaths among individuals who moved out of the state institutions.  We recommend you incorporate the numerous studies that have been conducted,  and the quality assurance reports, on many of the hundreds of individuals that have been successfully moved out of state institutions in the past decade.

It is critical that the state reinstate the very successful Voluntary Placement Program for children with significant challenges in the community.  The elimination of this community based, cost effective, option is directly correlated to the expanded use of RHC’s for children.

We concur with the State Arc in recommending that “the  way to save the most money is to close the entire facility as quickly and safely as possible. Focusing on a cottage here and there is not cost effective and we suggest you reconsider the schedule.

It would also be helpful to clearly state that the Heartland study for alternative uses for the RHC’s are not part of the report’s recommendations.  You might want to consolidate the Heartland information into it’s own section.”

Thank you for your thoughtful work so far and we hope that all of the comments of the community will be taken into account.  We have, collectively, a great deal of experience in developing community options and supporting people with a wide variety of needs in communities across the state.

Respectfully,

Sylvia Fuerstenberg, MSW

Executive Director, The Arc of King County

The Arc of King County
Serving People with Developmental Disabilities and Their Families Since 1936
206-829-7005

sylvia@arcofkingcounty.org

Remembering Nancy Melzer, Dear Friend & Colleague

I have spent quite a few hours contemplating our short little lives these days.   The loss of Nancy Meltzer in my life has had a profound impact on me. One that I was not really prepared for.  Although, no one is really prepared for loss.

Nancy has been a fixture in my professional life for over two decades now.  She was a willing and able mentor when I first moved back to the Seattle area, and took my first Exec. Director job at a Developmental Disabilities agency.

Nancy, for me, was the living example of how one person’s ripples in the pond can reach out and impact the shoreline of our world.   I can still hear and feel her energy around me here, at The Arc.  Her intensity about learning everything and her determination in challenging a system that she thought to be unfair.

I can picture her in a meeting intently taking notes and questioning speakers.   She spent hours on the phone helping families, at the end of their rope, navigating a complex system.   There was much joy in her life – she spoke so often about her wonderful grandchildren, about her daughter and of course, her husband, Ron (the saint!).

I used to have this wonderful picture on my phone of Nancy and Margaret Lee with huge smiles on their faces.  I think, at the time, we were at the Honey Bear café in Lake Forest park planning an attack on the legislature of some kind or other, as we would do over coffee from time to time.  They were my informants.   I miss Nancy and will keep her tenacity in my mind and her love in my heart.  My heart goes out to those most close to her…………

Remembering Our Dear Friend, Nancy Meltzer

Hello everyone,

Our dear friend, Nancy Meltzer, passed away this morning after a long battle with cancer.  I will always picture her joyful, smiling face as we presented her with the ‘Life Time Achievement Award’ at our Luncheon.  She was so full of life, joy and beauty at that moment.

Nancy had a profound impact on the world.  She touched many lives over her long years here, at The Arc, and throughout the state, in her tireless advocacy on behalf of people with developmental disabilities and their families.  There are hundreds and hundreds of families who received support and advice from her, and it is because of Nancy that many of the forgotten senior care giving families have support and hope all over the state of Washington.

She will be deeply missed, but her legacy will live on in all of us.

Sylvia

Blog on Blogging

So, what’s happening in my little brain this week you ask – or do you?   Blogging is not all that easy unless you have a “thing” to write about.   I saw Julie and Julia this last weekend and thoroughly enjoyed it.  Of course, she had “cooking” to write about as she worked her way through a popular cook book, and OF COURSE she was also a “writer”, which I would not say I am.

Occasionally, I have a bright idea and I am urged to share it with you.   I am hearing that people are reading my blog, but no one comments or engages with me.  I am not complaining…. Really….  I don’t really need that, but I would like to hear what YOU think.  So leave me a little message about what you like or didn’t like.  You can even say, “right on Sylvia!”, or just whatever comes to mind.

This week I am thinking a lot about my Board of Trustees.  We are going to have our annual retreat in a couple of weeks.   Each year, we spend a big chunk of time together to regroup, set the direction and plan activities for the Board during the coming year.

Last year, they decided to reorganize the Board’s committees, rewrite the by-laws and recruit new members; and they have done all that.

Now, we are at the “What’s next?” phase.  The Board will be discussing new job descriptions for themselves, new assignments to work on, marketing and fundraising events, how to educate themselves and others, how to become a more diverse group, and to ensure that our staff has the resources and support to be successful in our work.   That is a lot of work and commitment from people who have other jobs, kids (often with disabilities) and busy lives.

Thanks so much to the fantastic Board of Directors of The Arc!  I just want to acknowledge the gifts they give to The Arc, and the expertise that we call upon to which they give freely and willingly.

The Future is Bright for Young Advocates

Hey everyone,

I had the occasion to speak to a number of individuals about The Arc in the last week, following the death of Eunice Shriver. She certainly had a profound and long lasting impact on people with developmental disabilities all across the country. I am asked, “what’s next” for advancing the rights of people with disabilities in the community?” It is astonishing to think that when I started school (way back when) people with developmental disabilities were not a part of my school experience. They were in segregated classrooms or segregated schools. There was no place for them in public education. There were also no people of color in my school on the Gulf Coast of Florida.

My children grew up in schools where diversity is celebrated and people with developmental disabilities are included – not all the time, but also not isolated. As a result, a generation of young adults has enjoyed the many advantages a public education offers. They expect the right to live learn, work and play along side everyone else. Their disability is but a part of who they are, not the defining trait. (I think our Board member Eric Matthes said this in a meeting yesterday!)

So, what’s next? I think it is up to these well-educated, capable, articulate advocates with disabilities to tell us what’s next. They are leading the movement more and more. With our professional, familial and loving support, this younger generation will over time truly be included in all walks of life – without anyone blinking an eye. We have a long way to go, but we will do it in partnership with each other.

ACT Graduates in Action: Building Inclusion Together

Two recent graduates of our Advocating for Change Together (ACT) class, Jennifer Monteleone and Lisa Okada Visitacion, are working on their graduation project. They have an incredible plan to build real inclusion in the public schools through partnerships with the student organizations. They are calling their program BIT, Building Inclusion Together.

Jennifer and Lisa state, “We hope students will begin to shape their opinions and philosophies, as well as develop their sense of compassion about why the inclusion of people based on their abilities, not their disabilities, makes our communities stronger.” They have an ambitious plan to break down misconceptions about people with developmental disabilities through two core programs. The first will tap into the leadership of the school such as the ASB student leadership. The second program will have presentations hosted by people with disabilities living in the community who will share their every day life experiences and express what inclusion and self-determination mean to them.

Another facet of their program will offer video presentations in classrooms followed by discussions led by Lisa and Jennifer. A number of schools have expressed an interest and will be meeting with Lisa and Jennifer in the coming months. If you know of a school that would be interested – please contact Lisa at lisa@buildinginclusiontogether.org or Jennifer at Jennifer@buildinginclusiontogether.org

We are very excited to support this project, as their fiscal agent, and will soon have a way to link to their web site and through The Arc of King County donate to this project.

For more information about Building Inclusion Together, visit www.buildinginclusiontogether.org.

Push America

Push America was in town this week. What and enormous treat to meet these amazing, dedicated young men. The Arc staff, people we support and families attended a friendship dinner with the riding team and support crew on Sunday evening at Gas Works Park. The WEATHER was unbelievable, considering that it IS Seattle and it IS still June. Many of us saw them off on the ride this morning and many of our staff rode their bikes to see them. Having a chance to talk to so many of the riders was very special for all of us. We are inspired by their commitment and willingness to ride 5,000 miles to make the world a better place for all people, by promoting the rightful place of people with disabilities to be fully included with the supports they need. WOW. I learned that there are not only three riding teams, but construction teams deployed to make camps and other facilities for people with disabilities more accessible. They have completely changed my view of fraternities and I wish them well in changing the world one mile at a time.

“Times are Tough…..but”

“Times are tough.” You are probably a little sick of hearing that day after day. So what does that really mean? Tough for who? History shows that it is usually toughest for those who have the least, those who just scrape by when things are going smoothly. Smoothly…so what does that mean? Most of us have a job that pays the bills; almost everyone can buy the basics and maybe a bit more.

When people spend money the state collects taxes and redistributes that wealth for the greater good. But now times are tough. People are losing jobs and not spending money, so state supported groups that benefit the greater good are forced to “tighten their budgets.” This means that benefits, like protecting the health and well-being of children, old people and people with disabilities, maintaining roads and funding for police and fire departments must be reduced. As a result, the number of teachers, healthcare providers, police and fire workers is being reduced. As more and more people lose jobs and less and less people spend money, the cycle starts all over again.

We share the wealth and we share the poverty, I guess.

I look around, however, and see that more the 90% of us still have jobs and incomes and can still spend the money we need to spend. But what we are finding is that those still fortunate enough to be working are digging deeply into their pockets and sharing their – sometimes small – wealth. It is truly amazing! There were not many deep pockets of wealth at our recent fundraising luncheon, but people gave from their heart and their pocket books. And when the final tally was over they had given more than $21,000!

Thank you all for blessing us with your attendance, caring and gifts.

Living Our Legacy Fundraising Luncheon

I am looking forward to seeing many of you, our supporters at our luncheon Thursday. Our turnout is bigger than ever, and despite issues with grant and state funding, direct individual donors are supporting The Arc in larger numbers and people are volunteering here in greater numbers. I am very pleased with the outpouring and we hope to build on this renewed interest and commitment from our supporters. We have a renewed relationship with the University of Washington and will welcome 4 student interns into our outreach and advocacy program come late summer and early fall. There is always more that individuals can do to support The Arc. The Board is developing some new Board materials and hoping to expand and diversify our Board representation. To that end we are recruiting Board members. If you are interested in exploring how you can get involved on the Board level, call me. Also, click on the Get Involved button on our web site to see what more you can do in other areas.

Emergency Preparedness

This has certainly been an interesting few weeks. The news is filled with stories of swine flu and budget cuts – bringing to mind, prevention, planning and choice. Recently, I participated in a group meeting to provide feedback on prioritization of health related services in the case of a disaster. This meeting was co-sponsored by Public Health-Seattle/King County, Washington State Department of Health, and the Center for Disease Control. In attendance were various leaders from health and human services industries. It was coincidental that swine flu was on the rise. During our interactions, I discovered some interesting facts. Here’s one: Since 1997, we have the same number of hospitals with the same number of beds, and yet we have 300,000 more people in the county. Critical care supports, especially respirators, are in extremely short supply. If there was an outbreak of a pandemic flu, choices would have to be made about who receives those limited supports. Health service providers would have to begin prioritizing who receives assistance and how services are provided. We were at this meeting to share our values and thoughts about this process. There have been numerous meetings and studies with the intention of creating a set of guidelines for health care professionals, on the front line, to follow. This experience of prioritizing and analyzing was also beneficial to many of the participants, since we support people that need extra supports in the first place. In light of the budget cuts, many organizations are faced with prioritizing services and making choices of who will receive limited resources. Our choices are not easy. Our hope is to make the best plans possible and choices today that will benefit the future of our community.