Thursday, December 24, 2009

Can there be good in a bad budget year?

Governor Gregoire has released her proposed supplemental budget as required by law. It addresses another big deficit. Many critical services for individuals with developmental disabilities are proposed to be cut, however, there was actually increased spending for some community services. WE hope the Governor will "buy back" some of those cuts through other means.

The Governor's budget finally proposes that Washington State comes to terms with the fact that institutionalization is not the standard of care for people with developmental disabilities. Currently there is no real choice for services, the only entitlement in our state is institutional care.

There are strong feelings expressed by some parents whose children currently reside in one of the institutions slated for downsizing or closure in the Governor's budget. It is natural for them to be afraid of moving their son or daughter, change is difficult... but it isn't impossible. I have a 16 year old son with autism myself. When he was born I bought a house and it was our home for the first 12 years of his life. Eventually I was unable to climb the stairs in our 3 story home so I sold it and bought a one story rambler. I prepared my son for the move, involving him in how we would decorate his new room and showing him that he would have more room for his beloved Bionicles. He made the move with little problem because he was well prepared beforehand.

Some parents fear moving their child into the community because of prior bad experiences or lack of knowledge of what is really available in the community. I agree that some residential settings may not have the skills to address the needs of a child with significant behavior challenges, but there are are many other providers that do. Children's Residential Services at the Division of Developmental Disabilities has a list of placement options showing 27 current openings, some for respite and some residential. Two new homes recently added are specifically for children with intense behavior challenges. (You can find this list in a group of various charts at

Governor Gregoire recognizes that we can't close institutional settings without increasing community services. In her budget she added some funding to create new Children's State Operated Living Alternatives (state employees from institutions can move to these homes in the community for employment), serve 13 new clients in the Community Protection Program, fund greater utilization of residential services in the community and serve 24 adults with developmental disabilities aging out of other programs. This won't cover all that is needed, but it is a start.

12 states have now closed all institutions for people with developmental disabilities in their state, two of them, including Oregon, closed the last of theirs this year. They are now serving these individuals successfully in the community. This is a national trend that will continue. You can learn more about Governor Gregoire's plan for reforming how we care for Washingtonians with developmental disabilities at

Support and assistance will be available to families needing help to transition a loved one from an institution to the community. The Arc of Washington State cares about all individuals and families struggling through this difficult time and wants to ensure that individuals moving from an institution do have all the services in the community that they need. Keep in mind, it was parents from The Arc that originally advocated for the creation of institutions in our state because no services at all were available. Times have changed, there are better ways to help our loved one with a developmental disability and The Arc is here to help advocate for individuals and families to have the most inclusive and fulfilling life possible.

Let's begin the new year working together to increase funding for good community services for our loved ones. I know I will be doing that for my son and for so many others.

To a prosperous New Year-
Diana Stadden

Friday, November 20, 2009

Home Sweet Home by Guest Blogger Joy Caldwell

Home, sweet home. What does this phrase mean to you? What kind of feelings does it stir inside? The feelings and thoughts attached to these words are as unique and different as the person hearing them. Generally though, there is agreement that the word “home” stirs feelings of warmth, welcome, and a sense of belonging in addition to a place of shelter where needs are met in a caring environment versus the word “house” – a physical place of residence providing shelter.

It was with some of these thoughts in mind that I ventured out to visit two of Washington State’s Residential Habilitation Centers (RHC’s) at Fircrest & Rainier in Shoreline & Buckley respectively. Having heard arguments on both sides of the debate – for & against consolidation & closure of these facilities, I wanted to see for myself and form my own opinion. “Are these institutions really home where people live in a place of warmth with a sense of belonging where their needs are met in a caring environment? Or are they institutional houses where people are placed with their basic needs met?”

I was particularly struck by the locations of both of these RHC’s. They are both located in lovely surroundings on large parcels of land, beautifully landscaped in picturesque settings, yet notably secluded and separate from their surrounding cities and communities. Arriving at Fircrest, I couldn’t help but notice the age of the brick buildings, the overwhelming impression - cold and impersonal. Of course the large unsightly food, laundry, and garbage carts located outside the front doors of each cottage confirmed I had indeed arrived at an institution versus a community. Rainier on the other hand reminded me of an army base or prison facility behind the gates and fences with its old-style stark white peeling paint and red Spanish tile roofs, and buildings connected by long covered walkways.

I found the facilities at each campus were clean and maintained, though they felt cold, stark, archaic, and in great need of modern updates both inside and out. I found it peculiar that décor on both campuses looked like thrift store purchases from many years gone by, curled posters, cheaply framed faded prints, outdated curtains hung on barred windows if at all. I appreciate the work that these residents perform: sterilizing used Comcast remotes, shredding documents, thrift store duties, and pouring beautiful paving stones. However, the biggest factor I found lacking was the sense of community. I kept pondering, “How will the community ever be able to appreciate the values of self-determination, independence, inclusion, integration, and productivity for people with developmental disabilities if they’re kept isolated and segregated? When was the last time these adults and youth went on a vacation, went camping, saw a school play, or heard the laughter of a child?”

At Fircrest, each living room is arranged with one shared T.V. and generic “Dr’s Office” chairs set around the sparsely decorated walls of the vinyl floor room. Each child, youth and adult at Fircrest has their own very small bedroom, meagerly furnished with a twin-size bed and dresser. Out of the dozen or more bedrooms I visited there, only a meager few appeared personalized in any way. I thought, “Even college dormitories are more appealing than this”.

To my surprise, I did observe more texture, color and variety when it came to décor and “home-like” comforts in the Rainier cottages, where 8 residents share two warmly decorated living areas per side with more comfortable furnishings, overstuffed chairs and recliners. I noted that some of the Rainier residents also share larger more personalized bedrooms, 2 to a room, comfortably furnished with warm décor. Colorful attractive home-style dinnerware adorned Rainier’s tables while residents ate from standard melamine cafeteria dishes at Fircrest.

I have a daughter with multiple disabilities, similar to many of the residents in these two facilities. When Jessica was born with Down syndrome and cerebral palsy, I was given the option to place in her in an institution where she’d be cared for. As I toured the RHC’s, I kept thinking, “Would Jessica be comfortable enough to call one of these cottages home? Would she be happy with the lack of freedom, lack of choices and lack of independence? Is she really safer set apart FROM the community in an institutional house or safer IN a community home?”

I couldn’t help but feel sad and discouraged as I left these properties, wondering if the adults and youth were there willingly or if they’d ever been given a choice. As I pondered the thought of “relaxing and having a cup of tea in the Rainier Cottage”, a wise friend kindly reminded me of the secrets behind these walls – the abuses committed when there is no choice, no freedom, no other option, no way of escape. Are these dear people really at Home Sweet Home or prisoners kept safe inside prettied up institutional houses? My friend is right; I don’t want to drink my cup of tea here either.

As I drove away from these RHC’s, these institutions, these duplex houses, I turned my heart towards the warmth of home. My heart felt lighter as I pondered my daughters, each with her own unique and different abilities - her sense of belonging, her safe place in our home where hugs abound, laughter comes easy, choices are made, freedom is earned and independence is learned. “Home Sweet Home” – the words have never meant more.

Joy Caldwell , Skagit County Parent Coalition Coordinator
(For photos and a more comprehensive perspective of Joy's visit to the RHCs visit
As a parent of a child with a disability, Joy Caldwell has been both a formal and informal advocate for families and people with disabilities for the past twelve years. Joy has developed and taught seminars and workshops to the general public, early interventionists, therapists, teachers' assistants, caregivers, support workers, and parents. During her time in Edmonton, Alberta, Canada, she served as Chairperson on the Executive Board of Directors for the Edmonton Down Syndrome Society for two years.

Friday, September 18, 2009

Another budget shortfall, what will they cut now?

On September 17, 2209 the Washington State Economic and Revenue Forecast Council released its latest predictions on our state’s budget. According to Dr. Arun Raha, the state’s chief revenue forecaster, he is cautiously saying that “the state’s economy has reached its lowest point and will soon be on the mend.” According to Victor Moore, director for the Office of Financial Management, we are looking at a shortfall of $1 billion or more.

Governor Gregoire’s response is “Although we believe the recession has bottomed out, it will take some time for revenues to recover. I am preparing a supplemental budget request that accounts for the revenue shortfalls we have experienced since May.” State agencies have each been asked to provide her with two budgets, one cutting 5% and a second that cuts 10%. With the Division of Developmental Disabilities already having taken deep cuts in administration and programs such as residential services, supported employment, Medicaid Personal Care and other critical areas for individuals and families with developmental disabilities, where can more be taken from?

This coming legislative session, which starts on January 11, 2010, will be a very short session focused primarily on fixing the budget shortfall. There will be committees looking at possible bills, but it is unlikely that any bill requiring funding will have a chance of making it through. That does not mean we don’t continue to educate legislators about the need for funding services in the community, but our focus will be on retaining current community services and getting policy bills through that can strengthen services in the community, but that don’t have a fiscal note.

Two studies commissioned by the legislature last session are scheduled to submit a report before the next session starts. One has to do with reducing Residential Habilitation Centers (state institutions for people with developmental disabilities) by 250 beds through either consolidation or closure of facilities. The other report is from HB 2078 which will create a screening tool and training for jail and corrections staff when a person with a developmental disability is incarcerated. The legislature will review those reports and may make decisions based on them.
There are some policy issues being considered by advocates that will not have a fiscal note driving them such as the follow-up on respectful language, recommendations for alternatives to guardianship, a DD rights statute and some other legal policy issues.

Our main focus though, will need to be ensuring that no more cuts are made to DD services. One of the ways we can do this is by offering the Governor and legislators efficiencies that will save money without cutting services. We also need to encourage legislators to use any savings or efficiencies in the DD system to “buy back” programs that have already taken cuts. It is especially important not to staff up at the RHCs, which are much more expensive than community services, but to instead build up services in the community.

Much will be riding on your advocacy this next legislative session. Be sure you are signed up on The Arc’s Action Alert Center at so that you can stay informed when your voice is needed on specific issues. You can also follow The Arc of Washington State on Twitter by following ArcofWA for action alerts that may change moment by moment. Change is made by those who show up, whether in person, by phone, text or email, just so your voice is heard.

Diana Stadden

Wednesday, September 2, 2009

Senator Kennedy – Lion of the Senate, Champion for the People

Senator Edward Moore Kennedy, known as Teddy, was the biggest champion for those with disabilities in the United States Congress there ever was. His battle with brain cancer led to his death last week, just a couple of weeks after the passing of his sister, Eunice Kennedy Shriver, also a staunch advocate for those with disabilities and creator of Special Olympics.

The youngest of nine children, Senator Kennedy grew up in the shadow of a father who was active politically and in business, his brother Joseph Jr., who died in a plane explosion in WWII, brother John (known as Jack) who became the 35th US President but was assassinated before the end of his first term and brother Robert, who was also active politically and assassinated as he ran for president.

Senator Kennedy’s sister, Rose Marie (known as Rosemary), was considered to have an intellectual disability and her father had her undergo a lobotomy at age 23 hoping to control her mood swings. Instead, it left her incapable of speech and unable to care for herself. She lived in a residential care facility until her death. In 1968 another sister, Eunice, started Special Olympics, created to help people with intellectual disabilities develop self-confidence, social skills and a sense of personal accomplishment, in honor of her sister Rosemary. The senator’s son, Teddy Jr., lost a leg at age 12 because of bone cancer.

Senator Kennedy’s long list of achievements, over 300 bills he sponsored and passed, are highlighted by the Americans with Disabilities Act (ADA), the Family and Medical Leave Act, the Fair Housing Act Amendments of 1988, the Individuals with Disabilities Education Act, the Family Opportunity Act (which gives parents the ability to purchase Medicaid coverage for their children even if they are not low-income); the Help America Vote Act, and the No Child Left Behind Act. His fight for the rights and services that benefit people with intellectual disabilities are unmatched by any other member of Congress.

Unfortunately, the health care reform that Senator Kennedy tried so hard to get passed for most of his career has not yet come to pass. We must continue this fight for him, making sure our voices are heard on the importance of having health care reform that includes recognizing that people with disabilities are best served by receiving their services in their community, not in institutions, that there be no penalty for pre-existing conditions, that people receive necessary services regardless of the type of disability, including autism, that it include grants for training professionals on disability issues, standards for accessibility and usability of medical equipment by people with disabilities and that it lowers the cost of premiums and co-pays so that individuals with disabilities can afford to be covered. Stay informed and advocate for health care reform that will honor a man who did so much in his life to care for those most neglected.

Senator Kennedy once quoted President Hubert Humphrey’s “the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life -- the sick, the needy and the handicapped." Society needs to step up and acknowledge those it so often tries to forget.

Keep fighting for what is right-
Diana Stadden

Friday, August 21, 2009

Tours for Legislators - Show Them Community

Guest Blogger: Scott Livengood

As most, if not all of you know, our state continues to face budget difficulties in light of the economic downturn. This last legislative session was extremely challenging and ended with significant cuts for services for people with development disabilities, including cuts to vocational services, elimination of some adult day health services, cuts to Medicaid Personal Care hours, a reduction in the benchmark for supported living and group home providers, the holding of vacancies for community residential, and the decision not to close Yakima Valley School – among many other budget decisions. For agencies such as ours, the cuts have been extremely difficult as the reduction in revenue was directly targeted at the funding for wages and benefits for our valued employees who are already paid below a livable wage for direct support positions.

These are extremely hard economic times and the worst may not be over. Recent budget forecasts have shown an additional revenue shortfall that will need to be addressed. In addition, a separate initiative slated for the ballot would mean reduced revenues if passed. With decreased state revenue, the legislature will be going back to the budget to trim additional services. All of this could mean that essential services for people with developmental disabilities will continue to face the devastating impact of budget cuts.

In an effort to make our voice heard and educate legislators of the effects of the recent cuts, CRSA is working to coordinate legislative tours over the next couple of months. Supported living agencies are being designated as the lead in each legislative district and are being provided with contacts from the various coalitions and the vocational providers in the district. The intent is to conduct a coordinated visit with the legislators in each district. By working together, we will be able to show the quality of the services provided, the impact of the recent cuts, and the need to preserve these critical community resources. At these tours, information will be shared via a PowerPoint presentation and a video, as well as tours of homes in order to put a face on the services provided, illustrate the need and un-met need of families and people with developmental disabilities, and show the reality that people with development disabilities are being provided quality services in the community and that all individuals with developmental disabilities should be afforded this same opportunity and right.

The battle is not over. We ask that you get involved and make your voices heard. Please join us in meeting our legislators to advocate for funding for people with developmental disabilities. We need to take this opportunity to get the word out prior to the legislature going back into session, rather than scrambling in January and February to stave off any further cuts. Of course, we will still be working diligently during those months, but it is best to grab this opportunity when legislators actually have more than 15 minutes to meet with us! During these seemingly insurmountable times we must make sure that vital community resources for some of our most vulnerable citizens do not continue to be harmed. Please join us in these efforts!

About our guest blogger: Scott Livengood is the CEO of Alpha Supported Living Services, which is a nonprofit supported living agency providing community residential services for adults with developmental disabilities living in King County. They have been providing supports for 35 years and he is now in his ninth year at the agency. He has worked in the field for over 16 years and previously worked as a certification evaluator contracted with DDD and as a Program Supervisor for another supported living agency in the area. He originally started as a direct support professional, so he is acutely aware of the challenges and rewards of providing direct support for people with developmental disabilities. He previously served as the Chair of the Community Residential Services Association (CRSA), served as the Co-Chair of the Valued Lives Conference, and currently serves as the Legislative Co-Chair for CRSA.

Tuesday, August 11, 2009

Preliminary analysis of Initiative 1033

Guest Blogger - Remy Trupin

The Budget & Policy Center has lots of information on this issue in the form of a PowerPoint, one of our blog posts, or the paper we developed based on our powerpoint. They all can be found on our website or blog:

This is our preliminary analysis of Initiative 1033, a ballot initiative filed by Tim Eyman for the November 2009 ballot. It is for educational purposes only and does not constitute an organizational position on the initiative.

The basics. Initiative 1033 limits the total growth in revenue each year for state, county, and city general funds. If total revenue (including taxes and fees) for a state or local government grows more quickly than the prescribed limit, property taxes would automatically be reduced. Revenue raised in binding public votes would be exempt.

The key problems with this approach are:

1. It limits the growth in revenue to inflation plus population growth. This limit does not account for the natural increase in the cost of government, which rises faster than inflation in general in part because the services provided by government (particularly health care) have higher-than-average inflation rates.

2. This measure would severely limit the ability of state and local government to make expanded long-term investments in education, transportation, health care, and economic security.

3. During periods of recession, revenue can fall sharply because of decreased economic activity (as we are currently experiencing). The measure would limit the ability of government to return to the previous revenue level because the base would be reset. Because this measure would be enacted during the worst fiscal crisis in memory, this provision would be particularly damaging.

4. Property taxes already have strict limitations on growth and levels. The result of these has been particularly hard on local governments, who have limited ability to raise other taxes.

5. Shifting from the property tax to other tax sources makes our tax system less stable because property taxes are one of the least volatile revenue sources we have.

Similar measures have been disastrous elsewhere. The “Tax-payer Bill of Rights” (TABOR) passed in Colorado in 1992 is a case-study of this type of poor fiscal policy. TABOR amended the state constitution to restrict revenue and expenditure growth to the sum of inflation plus population change and require voter approval to override the revenue or spending limits.

In Colorado, TABOR resulted in far reaching negative consequences including large increases in the number of children who are uninsured (ranking last in the nation in that measure), dropping higher education and K-12 funding so significantly that they now rank as the 49th and 48thlowest state investing in the respective areas. In 2005, voters in Colorado responded to the deterioration of their public structures by suspending the TABOR for 5 years.

What are your thoughts on this Initiative?

About our Guest Blogger:

Remy Trupin is the founding executive director of the Budget & Policy Center. He directs the activities of the Budget & Policy Center with a focus on strategic direction, external connections and state budget analysis. Remy has worked at the federal and state levels for foundations and funders, produced research and conducted direct lobbying.

The Washington State Budget & Policy Center provides credible, independent and accessible information and analyses of state fiscal issues including both revenue and spending policies, with particular attention to the impacts on low and moderate-income persons. Their products inform state fiscal and budget policy debates and contribute to sound decisions that improve the well-being of individuals, communities and the state as a whole.

Saturday, July 25, 2009

National Health Care Reform – For Better or Worse?

President Obama campaigned on reforming health care, and true to his word, he is hard at work trying to get it accomplished. But how will people with developmental disabilities fare in this health care reform? First, you must realize that President Obama is not creating the health care plan. Instead he gave Congress three principles and told them to come up with a plan that meets them. He said that the plan must reduce costs, guarantee every American can choose their own plan (including a public option) and ensure quality and affordable health care.

Currently there are three very similar health care bills being worked on in various House committees, but the thought is that the “Affordable Health Choices Act” that just passed out of the Senate Health Education Labor and Pensions (HELP) Committee could be the bill that becomes the final plan. (See a mark-up of the bill at It appears the bill will help to standardize the benefits and limit costs as well as giving insurance companies some operative guidelines, such as not excluding pre-existing conditions. This is a great aspect for people with life-long disabilities. It should also help bring down co-pays and deductibles.

From what I am reading, it looks like the Community Choice Act (the long term care bill) will not be included in the final health care plan because of the cost. Mental health parity does seem to be included in the plan though, which means mental health treatments will be covered equal to physical treatments. Medicaid will remain an option for those who qualify.

Section 323 of the bill requires that within 9 months of the bill’s passage, standards will be set with technical criteria for medical diagnostic equipment and dental exams and procedures so that equipment is accessible to and usable by people with disabilities, allowing independent entry and exit as much as possible.

There will be grants to establish community health teams to support a medical home model, something our state has already been implementing. Grants are also provided for family caregiver training to support individuals with disabilities, dental programs targeting people with disabilities as well as developing training curricula for use in health professions, schools and continuing education programs that include working with individuals with disabilities.

Another large concern for families with autism is whether the plan will stop autism insurance discrimination. Some states have already passed bills to fix this problem, but it needs to be included in the national health care reform bill. It was not included in the Senate bill, although the House has been addressing it in their versions. Autism Speaks has rallied a national campaign on this issue.

There have been a lot of fears expressed about the public option that is being discussed, that it would be a centralized, government controlled plan. In reality, it would be a network of choices that are cheaper because more people are enrolled in them. The more people in a group, the more the costs of those who may need high cost care is spread out. For example, if one person requires $1,000,000 in care, his individual insurance would have to cover all $1,000,000. If one million people are in the same plan, that person’s costs could be covered by $1 from each person. This is an advantage to individuals with disabilities that can be fairly expensive to treat, as they are then not shouldering all the cost or being shut out because they are high risk.

It is hard to say exactly what the final plan will look like, as it appears that Congress will not decide anything until at least next fall. Hopefully this explains some of what is being considered. Please let us know if you see other advantages or problems for individuals with developmental disabilities in the health care plans being considered by leaving your input in the comments section of this blog entry.

Stay healthy-
Diana Stadden

Sunday, July 19, 2009

Communication Using the Latest Technology

Fast, effective communication is key to ensuring successful advocacy, self determination, coordination and partnership with others. In the past, communication was a leisurely art, long handwritten letters that made their way by snail mail (the postal service). Then we moved on to typewriters, making the need for rewriting messy pages less of a problem and producing more legible results, but we still had to rely on a slow mail system to deliver our messages. The quicker way was by telephone, but for a while we dealt with party lines, where others you didn’t know got to hear your every word. You were also tied to a landline, whether in your home, your office or standing in the rain at a pay phone.

Then came the day of computers – typing letters became so much easier because when you made a mistake you just hit the backspace button and presto, the mistake was erased and you went on with no mess. Soon after came the internet and along with it email. No need to wait for snail mail, we got to send our thoughts instantly to many people at once (plus you didn’t have to find a stamp).

Drive frantically trying to find a pay phone when you were on the road and needed to get information to someone? The miracle of cell phones came along and suddenly you are no longer tied down. Before long those cell phones carried your life – your address book is in it, you check your email or maybe schedule something on your calendar. Landlines in your home are starting to become a thing of the past.

Now the internet age has moved farther forward. To be really effective we create Facebook pages, Twitter accounts and blogs providing instant access to our thoughts and concerns. As difficult as it is for some who needs to be drug kicking and screaming into this digital age, these tools can prove to be extremely important to people advocating for the rights of individuals with developmental disabilities and who are committed to protecting the services and supports they need.

Facebook pages offer individuals a way to connect with many others and can be as private or public as you want it to be. You can share thoughts, information, pictures and many other things with your “friends”, people who have requested to be in your circle that you approve. Facebook also has group pages you create to share information about your organization, start discussion conversations on specific topics, and organize and advertise events. Send it to your friends, they send it to their friends…

Twitter can be useful for getting quick messages out, especially when action is needed right away. If you are sitting in a legislative hearing and a legislator says something that shows they are misinformed on an issue, send a “tweet” out to those following you letting them know calls and emails are needed to that legislator right away. Most legislators have their computers with them during hearings and many of them check their email, Facebook and Twitter accounts throughout that time. By sending out a tweet to get the info corrected, that legislator may get phone and email responses before the hearing is even over.

A blog is a place where you can write short articles that help provide better insight into a specific topic, such as you are reading now. It is a tool that can be used to positively impact the public’s perception and understanding of issues surrounding developmental disabilities. E-book readers, such as the Kindle, are another electronic tool that can be useful for those on the run. You can load thousands of books, documents and photos on a device that is the size of a half sheet of paper and only about as thick as a pencil. No need to haul heavy notebooks with you.

It may feel confusing, you may think this digital revolution is moving faster than you can keep up, but there are plenty of people willing to help you understand it and lots of information available on the internet. Most of these applications are very easy to set up, usually requiring just your name, email address and a password, they are also free. There’s no reason not to take advantage of the technology out there and make sure your voice is heard, your organization is growing and you don’t get left behind.

See you on the net-
Diana Stadden

Tuesday, July 14, 2009

Did my advocacy do any good?

The 2009 legislative session was an extremely difficult one. The legislature had to decide what programs and services to cut throughout the state budget. The Arc of Washington State sponsors Advocacy Day every Wednesday during the legislative session. Individuals with developmental disabilities (self advocates), their family and friends, service providers, other advocacy organizations and community members from all around our state converge on the state capitol in Olympia each week to educate their legislators about DD programs and services they use and the importance of funding them.

Over 700 people were on the capitol steps for the Independent Living Day rally during one Advocacy Day. They carried signs expressing the importance of not making huge cuts to community services and passionately shared their personal stories with legislators. With the impact of the cuts now being felt in services for developmental disabilities, some are now starting to ask “Did my advocacy do any good?”. The answer is a resounding “YES!”

Although DD services did take about a 3% cut in the budget, other services, such as mental health, took even deeper cuts. Advocacy organizations knew as we went into this legislative session that it was a difficult year because the economy had tanked and the state’s revenue was drastically reduced. We knew we had to expect some reductions, we knew your advocacy was needed to keep the cuts to a minimum. Remember, it was just two years ago that your advocacy helped bring about the greatest budget increase for developmental disabilities that we had in 30 years!

If you look at the state of Illinois and compare what their legislature did with ours, you will see that we fared much better. The Illinois Division of Developmental Disabilities will no longer fund 14 grant programs that provide family support, respite care, employment and other services. In contrast, the DDD Individual and Family Services program in our state, which funds respite care, therapies and other necessary services, managed to remain intact because of your advocacy. Illinois is also looking at 20 - 30% additional cuts in community living services, developmental training, and Intermediate Care Facilities.

Although Governor Gregoire, the Senate and most of the House of Representative members knew it was time to begin consolidating and closing state institutions for people with DD, a few key House members were able to block it, at least for now. Many legislators understand that having community residential options for people with DD are not only less expensive, but self advocates tell them they never again want to live in institutions (see the You Tube videos to your right). They value the freedom and independence that so many have fought for. Although no DD institutions were closed this session, the funding was reduced for them, so that DD community services did not take all the cuts. The legislature also ordered a commission to look at state institutions and bring a recommendation to them in November of this year to close 250 beds in DD institutions.

Your advocacy is needed now more than ever. Revenue forecasts show continuing declining revenue for the state, which means legislators will need to look for more places to cut. Call your legislators now, invite them to your home, show them where you work, help them to understand how important it is that you or your family have services that allow you to live in the community, just as they do. Whether you see your legislator in person, make phone calls, send emails or write letters, change is made by those who show up!

See you in Olympia-
Diana Stadden

Sunday, July 5, 2009

Freedom and Independence - Still needed for All

As we celebrate the independence and the freedom that men and women who serve our country fought to obtain for us (and who still fight to keep our freedoms secure), I am reminded of the men and women who have fought for freedom and independence for people with developmental disabilities. Parents, family members and friends, service providers and self advocates themselves fight for their right to live independently and in freedom in their community on a daily basis. Unfortunately, the battle just to obtain these freedoms is still ongoing. People with developmental disabilities continue to be put in institutions, community services need to be expanded, some still cannot easily access buildings in their community, and many feel as an outcast in a society that does not value them out of fear and ignorance.

The disability rights movement is similar to the civil rights movement for African Americans. As Rosa Parks fought for her seat on a bus as a black woman equal to a white woman, individuals with developmental disabilities have had to fight for their right to a seat on the bus equal to those without disabilities. Advocates for those with disabilities have had to fight for an education for their children alongside typical children, for housing and employment in the community and to try to negate the inaccurate stereotypes and assumptions made about them.

For years people with disabilities were sterilized in an attempt to keep them from creating more people who society felt had no worth. Parents were told when they gave birth to a child with a disability that they should shut them away in institutions. There they would end up being forgotten and society would not have to view their “defects”. The 1970s began to see a change in this thinking as parents and providers fought to keep these children at home or at least in their community. People with developmental disabilities and their families no longer see them as “broken” or needing to be fixed. Instead, they see a society that is broken and needs to be fixed in order to embrace all the gifts and talents these individuals have to offer.

The term developmental disabilities was first used in U.S. law in 1970, when Congress used it to describe individuals who were institutionalized, as it tried to improve conditions in those institutions (P.L. 91-517, “The Developmental Disabilities Services and Facilities Construction Act of 1970”). After a variety of amendments this law now says that they are entitled to full community inclusion and that self-determination is a right for people with developmental disabilities too (P.L. 106-402). People with disabilities deserve to have the same civil rights and control over choices in their lives as people without disabilities have. For more history go to and click on Independent Living History. For Washington State's history go to

Here in Washington State, there are many noteworthy people who have fought for the freedoms of individuals with developmental disabilities. Janet Taggart, Cecile Lindquist, Katie Dolan and Evelyn Chapman, all mothers of children with developmental disabilities, insisted that their children would not be institutionalized, but instead had the right to a free and appropriate public education. In 1969 they began working on legislation that would allow just that. In 1971 Governor Dan Evans signed the “Education for All Act” into law. That law became the foundation for the Federal “Individuals with Disabilities Education Act” (IDEA). Katie and Janet also started “Troubleshooters” which became the “Washington State Protection and Advocacy”, the first of its kind and a model for the nation.

Across the country and around the world there have been many advocates fighting for freedom and independence for people with developmental disabilities. I think of the efforts of Justin Dart (founded Justice for All with other activists to defend against congressional attempts to weaken the ADA), Geraldo Rivera (did an expose on Willowbrook and the deplorable conditions there, then worked with John Lennon on a benefit concert for the children), Eunice Kennedy Shriver (started Special Olympics), Temple Grandin (adult with autism, world renowned livestock specialist and advocate for employment and independent living) just to name a very few of them. The list goes on and so does the need for strong advocates.

As you reflect on the freedoms you enjoy and the independence you cherish, remember that there are many individuals with developmental disabilities out there who need your help in advocating for changes that will allow them to have those same rights as well.

Until next time,
Diana Stadden

This week’s blog is written in memory of John Leoni, a life coach for adults with developmental disabilities who was tragically killed last week while riding his bicycle in Seattle. John brought individuals with developmental disabilities to meet their legislators in Olympia, knowing how important it was that their voices were heard. He had a master's degree in history, focusing on the developmental disabilities civil rights movement. He was loved by many and will be greatly missed.

Sunday, June 28, 2009

What is The Arc of Washington State?

Welcome to our new blog! We hope this gives individuals with developmental disabilities (self advocates), their families, service providers and other professionals and community members interested in issues and topics around developmental disabilities a place to gain information and share new ideas and viewpoints.

The Arc of Washington State advocates for the rights and full participation of all people with developmental disabilities. Along with our network of members and chapters, we support and empower individuals and families; connect and inform individuals and families; improve support and service systems; influence public policy; increase public awareness; and inspire inclusive communities.

Our vision is for a world where people with developmental disabilities are included in their communities and neighborhoods and where quality supports and services respond to their needs and personal choices. The Arc fulfills its mission and vision through many programs. It takes a variety of methods to address the wide range of needs of individuals with developmental disabilities and their families.

Parent to Parent provides emotional support and information to families of children with special needs and/or disabilities. Learning that your child has a developmental disability can be a traumatic experience. Parents have many questions and concerns in coping with their child's needs and their own feelings. Personal support from another parent, who has a child with similar needs, can be helpful in coping with these challenging experiences and feelings. Helping Parents (volunteer mentors) are available to provide support and information.

The Advocacy Partnership Project is a program that provides information on legislative issues to families and self advocates that empower them to have a voice in the legislative process. Advocacy Days are hosted weekly during legislative session as a way to encourage people to use their voice on issues important to them. Video podcasts are created weekly during session through a partnership between the DDC and The Arc of Washington.

Self Advocates In Leadership (SAIL) is a program which focuses on bringing self advocates together, providing information and technical assistance to assist them in representing their needs to their families, providers and legislative representatives.

The Life Opportunities Trust is a public-private partnership that makes it possible for families to enhance the quality of life for their loved ones with a developmental disability, and for individuals with developmental disabilities to participate in their own financial future. The Arc of Washington State has been selected as Trust Manager for the fund. We provide information, enrollment assistance and the administration of individual trust accounts.

Medicaid Personal Care Training (MPC) provides information, resources and training to parents who are providing care for their adult sons and daughters with developmental disabilities.

The Senior Family Project addresses a critical need for elderly parents still caring for adult children with developmental disabilities at home. The Arc of Washington contracts with local Arc chapters and Parent to Parent organizations to provide information and learning events for some of these senior families.

Striving to Achieve Real Success (STARS) is a Thurston County advocacy group for young adults with developmental disabilities coordinated by the Arc of Washington and funded by a grant from Thurston/Mason County DD.

Brochures, booklets, DVDs and other publications are available from The Arc of Washington on these projects and other important topics. You can call (888) 754-8798 for more information.

I hope this helps people to understand who The Arc is and what we do here in Washington State. If you have ideas of other projects The Arc might want to consider being part of please share them with me. Is there a topic you would like to see addressed in this blog? Let me know that as well. Thanks for being involved!

Diana Stadden
The Arc of Washington State