Remarks from The Arc

Tougher Times Ahead for DSHS

2011-10-12T12:08:00.000-07:00

This has been a difficult last few years for the Department of Social and Health Services (DSHS) and for the Division of Developmental Disabilities (DDD), where many people with developmental disabilities turn to for state services that will help them live safely in their communities and lead productive lives. With the recession, budget cuts have reduced funding in many of the programs that people depend on. The latest budget proposals from DSHS/DDD (and the Health Care Authority) now would include the complete elimination of services for 41% of the entire DDD caseload, leaving people without needed prescription drugs, personal care assistance, residential and employment services, and many other vital services. (Learn more at http://arcwa.org/takeaction/washingtonstate/olympia_insider/)

Now we learn, that in addition to the unsettled future of budget cuts, leadership within the agencies will be shaken up again. Read on for a letter of resignation from the Secretary of DSHS, Susan Dreyfus:

October 12, 2011

To: DSHS employees, members of the Cabinet, State legislators, Tribal leaders and our many Partners,

Greetings:

I joined you in leadership as Secretary of the Department of Social and Health Services in May of 2009. I said then that all paths had led me to the state of Washington and my ability to answer the call to serve Governor Gregoire and the citizens of this state. Together, we have been striving to lead change, stay focused on our values and priorities and to adapt with agility to the worst economic recession we have seen since the Great Depression. I am proud of the strategic work we have begun and have accomplished together. My life is forever blessed for the time I have spent with you in this most beautiful state. I am so appreciative of the support my husband and family have given me while I have lived far from our home in Wisconsin these past two and a half years.

I am writing to let you know that effective January 2, 2012, I have accepted the position as President and CEO of Milwaukee-based Families International, Inc. I will stay on the job here in Washington, working hard with you, through special session, which begins November 28.

Families International, Inc. is the nonprofit parent organization of three, national nonprofit organizations: Alliance for Children and Families, United Neighborhood Centers of America (UNCA), and Ways to Work; and one for-profit company, FEI Behavioral Health.

It is important to me that you understand the unique circumstances and timing that led me to accept this new challenge and opportunity now. I had every intention in serving the Governor and working with you until later next year before exploring what I might do after this administration. I was the Senior Vice President and COO of Families International, Inc., and the Alliance for Children and Families for almost five years, Peter Goldberg, the former President and CEO, hired me and became both a close friend and mentor to me over the years. Tragically, he died in August of this year and the Families International Board has extended me the honor of succeeding Peter and leading their outstanding organization into the future.

Families International, Inc., serves as the parent organization for three nonprofit organizations—the Alliance for Children and Families, United Neighborhood Centers of America, and Ways to Work—and one for-profit company, FEI Behavioral Health. These companies, headquartered in Wisconsin, work to strengthen the capacities of the nonprofit human services sector across America and to advocate on behalf of the sector and the people, neighborhoods and communities they serve. You all know that I have committed my life’s work to being a part of having a greater societal impact through partnering across sectors to reduce poverty, improve people’s health and improve their educational and employment success. This new position provides me with the ability to continue this commitment at a national level, and to rejoin my husband at our home in Wisconsin.

Over the next 60 days, we will have many opportunities to see one another and reflect on our work and accomplishments together, as well as the work that is yet to be done. However, right now, we have some very important work to do during special session to emerge from the impacts of this great recession and stay true to the values of our state. I look forward to working diligently with you through special session on these key issues.

I believe we are all stewards of the jobs we have and that they do not belong to us. Our job is to pave the way for those who will follow us and to leave our positions and organizations stronger and better aligned for the future. We have accomplished much together during this unprecedented time.

Again, it is truly an honor to join with you and the Governor in leadership, and my life is forever blessed for the time I have spent with you! We have much work to do and I look forward to seeing you soon.

Susan N. Dreyfus
Secretary
Department of Social and Health Services

2011 Changes to Medicaid Dental and Vision Coverage

2011-08-10T13:32:00.000-07:00

Budget cuts in the 2011 Biennial state budget created reductions in a number of services needed by individuals with developmental disabilities. Two programs had changes you need to be aware of. Below are the management bulletins explaining the changes.

Adult Dental Coverage

Effective July 1, 2011, comprehensive dental services were restored for three groups of Medicaid adults:
• Women who are pregnant
• Clients living in nursing homes
• Adults enrolled in 1915 (c) Home and Community Based waiver programs.

Effective October 1, 2011, the following clients will no longer be eligible for comprehensive dental services:

• Adult clients whose care is managed by the Division of Developmental Disabilities but who do not fit in the categories above.

The agency has developed a decision-making tool for providers to use to determine if a Medicaid-covered adult client meets this criteria and is eligible to receive the restored set of dental services. Medicaid also has developed policy for “How to Bill” under these criteria.

A formal provider memo communication, web access to the decision-making tool, and a set of Frequently Asked Questions (FAQ) will soon be available on the dental home page at: http://hrsa.dshs.wa.gov/DentalProviders/DentalIndex.html.

Clients who are eligible for these services may already have received services since July 1 or be scheduled to receive services in the future. Medicaid will reimburse providers for this care. The decision-making tool and the memo will include expedited authorization numbers for each of the eligible groups listed above. Once you have established eligibility, you can bill for these clients’ services using those numbers.

The change in dental coverage for adults with developmental disabilities was intended to become effective July 1, but that date did not allow time to rearrange Medicaid coverage and provide required notice to clients.

There is no change in covered dental services for children – clients 20 years of age or younger. There is also no change in prior authorization requirements.

Adult clients other than the specific groups listed above are not eligible for comprehensive dental services. They are restricted to the emergency oral health benefit implemented on January 1, 2011.

Adult Vision Services

Medicaid providers can now obtain low-cost eyeglass frames and lenses for Medicaid clients who otherwise might not be able to afford vision hardware because of state budget cuts.

Legislation passed this year and signed by Governor Gregoire allows Airway Heights' Correctional Industries Optical Center to continue making vision hardware for Medicaid providers and patients. Under the law, providers can furnish the eyewear to Medicaid patients at the same cost they pay the Optical Center. Prices are expected to range around $20 for a pair of glasses.

The vision benefit budget cut was one of several changes affecting coverage for clients of the Medicaid program ages 21 and older. None of the changes affected children’s benefits, which are generally protected under federal Medicaid law. The cuts also did not change coverage of eye or hearing exams for adults. Those remain covered by Medicaid.

• More information about the bill and copies of the legislation are available on the Internet at: http://apps.leg.wa.gov/billinfo/summary.aspx?bill=5352&year=2011
• Additional information also will be posted on the Airway Heights web page soon: http://www.doc.wa.gov/facilities/prison/ahcc/default.asp
• Providers are reminded that dispensing codes 92340-92342 are still valid codes, and that Medicaid will reimburse providers for dispensing the glasses.

Substitute Senate Bill 5352, was originally sponsored by Senators Jim Honeyford, R-15, Debbie Regala, D-27, and Dan Swecker, R-20. It passed both chambers unanimously and was signed by Governor Gregoire on April 18.

What's Next?

Because the state must keep a balanced budget in line with the quarterly revenue forecasts, we can expect additional cuts to services and programs. The July revenue forecast was worse than expected and the September forecast will likely bring more of the same news, as recovery is happening slower than anticipated.

Your voice in the legislative process is needed now, more than ever! Be sureyou aresigned up for The Arc's Action Nework, and whether by email, phone or other communication, make sure your legislators know the effect of making additional cuts to the services you, your friends and family, as well as many others in this state need. It is approximated that there are about 80,000 people in Washington State who have a developmental disability. Be one of those making your voice heard! Sign up for Action Alerts at http://capwiz.com/arcwa/home/

History is made: 2SSB 5459 passes the legislature, watch on TVW links

2011-05-26T10:27:00.000-07:00

Yesterday, May 25, 2011, marked a historic event in our state with the passage of SB 5459! The five aging Residential Habilitation Centers in our state used to house 4,400 people with developmental disabilities, today those institutions house about 860 people. In addition to this, over 13,600 people with developmental disabilities live at home with their families or in their local communities and have the same level of need as those in the RHCs, yet receive no services at all. 19% of the budget for people with developmental disabilities is used for only 2% of the people who qualify services and receive them in the RHCs, the most expensive model we have.

Your advocacy helped legislators understand the need to consolidate the RHCs and begin using the savings from doing so for those who qualify for services, but receive nothing. Frances Haddon Morgan Center has been downsizing already, the remaining residents will be transitioned to a community setting (or to another RHC if they choose) and the facility will close by December 31, 2011. In addition, Yakima Valley will have no new admissions (except for respite care) and once it has only 16 residents left, it will close. Another very important piece of this legislation is that children under 21 will no longer be institutionalized!

Thank you for your advocacy efforts. Be assured that we will continue to monitor this issue to ensure that people are transitioned in a thoughtful and respectful manner and that their needs are met. We also will make sure that all savings from this consolidation will be used for people with developmental disabilities to get their needs met with services in the community.

TVW recorded the legislative testimony for and against the bill. Below are the links to the House and Senate floor action on 2SSB 5459:

House:
http://www.tvw.org/media/mediaplayer.cfm?evid=2011050127B&TYPE=V&CFID=3674951&CFTOKEN=53189366&bhcp=1 2SSB 5459 is the first bill heard in this segment of floor action so watch starting at the beginning.

Chamber: HOUSE 2011 1st Special Session
Bill No.: 2SSB 5459
Description: FINAL PASSAGE AS AMENDED BY THE HOUSE
Date: 5-25-2011

Yeas: 63 Nays: 33 Absent: 0 Excused: 2

Voting yea: Representatives Anderson, Armstrong, Asay, Bailey, Billig, Blake, Carlyle, Chandler, Clibborn, Cody, Condotta, Darneille, Dickerson, Dunshee, Eddy, Finn, Fitzgibbon, Green, Haigh, Haler, Hargrove, Harris, Hinkle, Hope, Hudgins, Hunter, Jinkins, Johnson, Kagi, Kelley, Kenney, Klippert, Kristiansen, Lytton, Maxwell, Miloscia, Moeller, Morris, Nealey, Orcutt, Orwall, Pearson, Pedersen, Pettigrew, Probst, Rivers, Roberts, Rodne, Ross, Santos, Seaquist, Smith, Springer, Sullivan, Takko, Taylor, Tharinger, Upthegrove, Van De Wege, Walsh, Warnick, Wylie, and Mr. Speaker

Voting nay: Representatives Ahern, Alexander, Angel, Appleton, Buys, Dahlquist, Dammeier, DeBolt, Fagan, Frockt, Goodman, Hasegawa, Hunt, Hurst, Kirby, Kretz, Ladenburg, Liias, McCoy, Moscoso, Ormsby, Overstreet, Parker, Reykdal, Rolfes, Ryu, Schmick, Sells, Shea, Short, Stanford, Wilcox, and Zeiger

Excused: Representatives Crouse and McCune

Senate:
http://www.tvw.org/media/mediaplayer.cfm?evid=2011050126B&TYPE=V&CFID=3674951&CFTOKEN=53189366&bhcp=1 Slide the cursor on the blue line at the bottom of the video box until it is 1 hour and 9 minutes (01:09:00 on the left side clock) into the floor action.

Chamber: SENATE 2011 1st Special Session
Bill No.: 2SSB 5459
Description: FINAL PASSAGE AS AMENDED BY THE HOUSE
Date: 5-25-2011

Yeas: 32 Nays: 13 Absent: 0 Excused: 4

Voting yea: Senators Baumgartner, Brown, Delvin, Eide, Ericksen, Fain, Fraser, Hargrove, Harper, Hatfield, Haugen, Hewitt, Hill, Holmquist Newbry, Kastama, Keiser, King, Kline, Kohl-Welles, Litzow, McAuliffe, Murray, Parlette, Pflug, Prentice, Ranker, Regala, Stevens, Swecker, Tom, White, and Zarelli

Voting nay: Senators Baxter, Becker, Carrell, Chase, Conway, Honeyford, Kilmer, Morton, Pridemore, Roach, Rockefeller, Schoesler, and Sheldon

Excused: Senators Benton, Hobbs, Nelson, and Shin

Diana Stadden
Advocacy Partnership Project
The Arc of Washington State

The Virtual “Museum of disABILITY History”

2011-05-05T14:38:00.000-07:00

Recently I ran across a web site for The Museum of disABILITY History. This online wing of the Museum of disABILITY History complements their freestanding "bricks and mortar" Museum. They also have traveling exhibits.

The Museum of disABILITY History is dedicated to advancing the understanding, acceptance and independence of people with disabilities. The Museum's exhibits, collections, archives and educational programs create awareness and a platform for dialogue and discovery. It opened in October 2010 and is located in Buffalo, New York.

This virtual museum is packed with historical information, photographs and old documents that provide an in-depth look at how people with disabilities were perceived and treated throughout history. It addresses some of the harsh realities that society has grown through such as eugenics, sterilization, trepanning (letting the evil spirits out of the head was to cut a hole in the skull) and much more.

The bright side of the museum focuses on the advocacy movement and on reformers such as Dorothea Dix, Josephine Shaw Lowell, William Pryor Letchworth, the Kennedys and many more. I encourage you to take some time to browse this site and glean a glimpse of where we have been, where we are and where we still need to go.

http://www.museumofdisability.org/home.asp

Community First Choice Option - the NEW Medicaid Personal Care

2011-03-08T13:14:00.000-08:00

Medicaid Personal Care (MPC): A Medicaid program that is allowed under Washington State’s Medicaid State Plan, this program provides assistance with activities of daily living to individuals who receive Social Security Income (SSI) or are approved for other Categorically Needy (CN) medical programs. Services are available in the client’s own home, adult family homes, and boarding homes with an Adult Residential Care (ARC) contract. The program is administered by Home and Community Based Services (HCBS) and Division of Developmental Disabilities (DDD) administrations.

An assessment is done by a case manager, nurse or social worker from DDD, HCS or Area Agency on Aging (AAA). Clients must meet the functional criteria based on the social service assessment AND the financial eligibility based on eligibility for a non institutional CN Medicaid program.

MPC is a state plan entitlement program. If clients are eligible for CN without using the higher income and resource standards for institutional eligibility and meeting the functional eligibility criteria for the program, they are “entitled” to MPC. This makes MPC the priority Medicaid program for personal care services and is usually the first program considered. This is because waiver programs that provide personal care such as HCBS Waivers or DDD Waivers are restricted to a certain number of clients. MPC services include personal care services and CN medical program. MPC services are authorized by HCBS and DDD.

The Community First Choice Option (CFCO) would provide individuals with disabilities who are eligible for nursing homes and other institutional settings with options to receive community-based services. CFCO would support the Olmstead decision by giving people the choice to leave facilities and institutions for their own homes and communities with appropriate, cost effective services and supports. It would also help address state waiting lists for services by providing access to a community-based benefit within Medicaid. The option would not allow caps on the number of individuals served, nor allow waiting lists for these services.

There are two significant fiscal reasons that combine with increased independence and self sufficiency for individuals with developmental disabilities.

~ A significant enhanced Federal Medical Assistance Percentages (FMAP) of 6% will be provided to encourage states to select this option. This amounts to an additional $51 million for Washington State EVERY YEAR!

~ A key component of the CFCO is that personal care providers would be teaching skills to clients instead of just providing the service. For example, many individuals with developmental disabilities could cook nutritious meals but just don’t know how, so the care provider fixes the meal. For many, having a care provider teach them how to do it leads to more independence and less reliance on a provider.

The CFCO Waiver won’t be available until October 2011 but now is the time to start preparing. The new federal rules for the CFCO can be found at: http://www.ofr.gov/OFRUpload/OFRData/2011-03946_PI.pdf and the Governor and Legislators in Washington State need to take the lead and direct the Division of Developmental Disabilities to apply for the CFCO.

Watch for more information to come as we learn specifics of how and when this state plan service could be adopted.

Diana Stadden
Policy & Advocacy Coordinator
The Arc of Washington State

Does Federal health care reform make you feel sick?

2011-01-18T10:05:00.000-08:00

People around here seem to be pretty anxious about the implementation of the Affordable Care Act. Legislators are worried too. This week the House Health Care and Wellness Committee met to receive an update on implementation. The Health Care Exchange seems to be the biggest concern of policy makers right now. The purpose of the exchange is to provide affordable coverage for individuals and small employers. The due date to have established an exchange is January 1, 2014. Legislator’s questions are about the minimum benefits that must be covered by providers in the exchange. This will likely not be resolved until the Feds issue regulations sometime in 2012.

If you too are feeling a bit queasy about this health business, there is no need to go the doctor for advice. Let me share some home remedy resources you can use to check on our State’s progress. I keep up on the “Next Steps in Washington” by looking at the Governor’s Website at http://www.governor.wa.gov/priorities/healthcare/reform.asp

Additionally, the Office of Insurance Commissioner website has information about current plans and activities and how they impact consumers including a list of his employees that answer questions (if they are still employed to answer the phone) at http://www.insurance.wa.gov/consumers/reform/national_health_care_reform.shtml

And, I follow the Joint Legislative Select Committee on Health Care Implementation which is considering the insurance plans to low income people, the health exchanges, and workforce issues at http://www.leg.wa.gov/JointCommittees/HRI/Pages/default.aspx

Regarding implementing “Federal Health Reform” at the Federal Level, I find Families USA as my best resource. This organization is specifically focused on the things that concern families including families having children with disabilities. They not only have an informative website but they provide free national call-in conferences to learn about and discuss current issues. I have attended a few of them. Anyone who is interested in receiving updates and action notices can subscribe to an email subscription. I subscribe to follow things for the DDC. The website is: http://www.familiesusa.org/

David Maltman – Policy Analyst for the Washingtn State Developmental Disabilities Council

A Sister's Love and Concern

2010-12-16T11:13:00.000-08:00

My name is Tiffany Resendiz and I am a care provider for my little Sister Victoria Trueblood. My sister Victoria is 18 years old and was diagnosed with Rett Syndrome when she was about 5 years old. Her Syndrome keeps her from walking and talking, the things you and I might take for granted. She is mentally about the age of a 6 year old and acts like a little baby would.

I have been caring for my sister for about 4 years now and I couldn't picture myself doing anything else. My sister is such a joy to send time with. My sister is currently on a number of medications. She takes 2 medications for her seizures, 1 for her back pain due to a Harrington rod, 1 for her indigestion problems and the list continues on and on. As of currently, she has 420 hours for care providing for her, without which I don't know what my mom would do.

Taking care of Victoria is a 24 hour job, she even needs to be listened to through the course of the night due to many Rett Syndrome girls passing away in their sleep. The job which entails taking care of Victoria is not a easy job at all but I wouldn't see myself doing anything else. The thought of not having the hours available for taking care of Victoria is a idea that my mind would never want to grasp. I am not in one bit afraid of losing the hours for self pity but the thought of Victoria not having hours to receive proper care for bath time and nightly activities scares me to death.

On the topic of health care such as dentist appointments, eye doctor appointments and prescriptions being cut could be severe and even deadly to a person with special needs like my sister. Without her medications my sister couldn't survive even a day and the thought of living without my sister is the worst thing imaginable. Without eye glasses adults and even children have no way of seeing and for some disabled people seeing is everything to them when they cant walk or talk. Seeing is all they have. Not being able to go the dentist is just as horrible because these are the only teeth they are going to have and if this privilege is taken away how will their teeth be properly cared for?? Could you imagine haveing no money or means to pay for the basic things like a simple teeth cleaning or fluoride treatment.

I'm sure many non-disabled people couldn't imagine what this would be like because they have proper medical care, but for me with hands on experience it could be vital for the survival of someone like my little sister. I love my sister very much and the thought of her turning 18 didn't scare me so much until I saw the cuts that were being made and the decisions that were underway.

I am asking you to think about the many disabled adults who are affected and ask yourself, If I was disabled, would I want for myself what I am cutting from so many other disabled people?? Put yourself In my shoes for a day, taking care of a helpless person that has no means but to be in the graces of others and I bet you will find your answer changes. Please, for the sake of a little girl that is disabled and many others who cant speak for themselves, reconsider your decision. If my little sister cant speak then I alone will be her voice.

Tiffany Resendiz

Not One Step Back!

2010-12-09T10:11:00.000-08:00

I want to talk about the danger to community services for those with a developmental disability during this Legislative session. The current political landscape does not look promising for community services as the Legislature struggles to close a projected shortfall for the coming two years.

During the legislative session three budget proposals are created, the Governor's, the Senate and the House of Representatives. Although these proposals will differ slightly from one another, we can be sure that there will be significant cuts offered in the discretionary spending areas of the budget. Services for developmental disabilities are in this area of the budget. I have seen the proposal for the Governors supplemental budget and though some of them may change for the better, we cannot count on it.

Currently the Governor proposes the elimination of all medication coverage for persons on Medicaid, with the exception of those provided within a medical facility. If this is allowed to stand, persons with developmental disabilites who do not have the resources to pay for the everyday medication that allows them to function and reside in the community, would no longer have medication available to them.

All dental care, with the exception of emergency pain control, would be eliminated. This could mean that unless a tooth is pulled, there is essentially no treatment and if the patient needs pain medication after leaving the dental office it will not be available, because it would be an outpatient medication.

Eyeglasses would be eliminated.

These are just three of the programs currently scheduled for elimination. Others are proposed for reductions in funding from 2% to 50% depending on the program.

Although this is not an accurate figure, if say you had 120 hours of family support service available to you, it could be reduced to 80 hours.

Providers of Residential Services would receive enough of a cut that their ability to hire and retain employees will be seriously impaired. Case managers working with the unserved will be eliminated. Job placement services for those leaving school will no longer exist.

For all of us, and the ones who need service, this may well be our Alamo.

Now is the time for all good persons to heed the call to arms to prevent the loss of services that those who came before us fought so hard to attain and to keep them from slipping into the abyss of the closet.

Now is the time to heed the call Stalin gave to his Commanders when the Germans were twenty miles from Moscow. The message was simple, "not one step back".

I am asking that each of you join me in the upcoming battle to preserve meaningful services in the community for those with a developmental disability and I ask you for one simple thing, ten minutes of your time to contact your representatives in Olympia on this issue. I further ask that you coordinate your effort through The Arc so that the message will remain in front of our Legislators throughout the session.

Some of you will be thinking that there will be enough others to carry the load or let the good intention of calling fade like a distant memory. At this point in the history of Community Services I cannot over stress the importance of your involvement.

For those of you who do not think you have the skill to articulate the message, I would say you only have to look at a stammering child asking you for something to realize that although the words are not perfect and the child is stammering, the message comes through loud and clear.

I ask this Chapter to take on the task of coordination and to ensure you have the information needed to make the call.

If you are a person with a developmental disability, a parent, a friend or perhaps a service provider, tell how these draconian cuts will affect you or the ones you care about.

Ten minutes of your time is not a great deal to request and that ten minutes you spend may well be the factor that saves a service or for that matter many services.
Even if it looks like we are not going to be totally successful, we might just be able to accomplish what those at the Alamo did and give those who follow a greater chance to prevail.

I want to thank each and every one of you for listening. I hope that each of you has a joyous holiday season and until we meet again may God forever hold you in the palm of his hand.

By Lew Isham

Lew Isham has been a member of The Arc of Kitsap County for over thirty years. He currently serves on the Board of Directors of The Arc of Washington State.

Make your vote an informed one!

2010-08-06T12:09:00.001-07:00

The Advocacy Partnership Project, a program of The Arc of Washington State, puts the power of change into the hands of people with developmental disabilities and their families. One of the goals of the project is to provide the information to make informed decisions to self advocates, their family and friends, providers who serve them and interested community members. Toward that goal, The Arc created a short questionnaire and emailed it to candidates running for the state legislature. We have compiled the responses received, by district, for advocates to review and make informed choices on election day. If you are unsure what district you live in, go to http://apps.leg.wa.gov/DistrictFinder/Default.aspx and enter your address.

Each response contains the candidates name and email address (when available) so that if no response was returned, you can email your questions to the candidate personally or ask for additional information on responses submitted. Your vote is your power! Make sure you are informed when you mark your ballot!

Here’s a link to the questionnaire online: http://www.arcwa.org/2010_Leg_Questionaire.htm

Critical Budget Action Needed!

2010-07-21T13:47:00.000-07:00

H.R. 4213, originally named the "American Jobs and Closing Tax Loopholes Act" has now been renamed the "Unemployment Compensation Extension Act." It originally included a 6 month extension of the FMAP (Federal Medicaid Assistance Percentage) increase. The FMAP extension was removed and the bill is now moving forward just addressing unemployment benefits.

Most services that individuals with developmental disabilities receive from our state are paid for by state funds and FMAP funds. Because of the recession, states were granted a temporary increase in the FMAP percentage they received. HR 4213 was supposed to extend that increase for another 6 months. Because it appeared it would pass, our state built last year's budget on the assumption we would receive that extra funding.

If Congress does not approve the FMAP funding by the Aug. 9 recess, the Governor has said that she would have no choice but to make across-the-board cuts of 4 to 5 percent to make up for the $480 million dollars shortfall. This means many services would be cut or eliminated.

Time is of the essence! Call your Senators today and ask them to fight to get the extension of the FMAP increase put back into HR 4213. The Senate will likely vote on this bill later this week, then it moves on to the House. We hope Senator Murray and Senator Cantwell will push to include this before it is voted on.

Act now by phone and email at http://capwiz.com/arcwa/state/main/?state=WA

UPDATE: The Senate passed HR 4213 on July 21, 2010 WITHOUT including the FMAP extension. Senator Murray continues to work with the House to get it included in the bill on the House floor. Calls and emails needed now to your Representative, calls are best as they are counted by issue. Follow the link above to act.

UPDATE: HR 4213 passed both House on July 22, 2010 without FMAP extension. Not giving up, Congress is in session until August 9th.

Got any money saving ideas?

2010-07-20T14:30:00.000-07:00

This year is shaping up to be another difficult budget time for our state legislature. We are looking at another $3 billion dollar shortfall this biennium. Since 2008 our state has had to figure out how to deal with a $12 billion shortfall, $5.1 billion of which was filled by cuts to services and progams,$3.6 billion from federal funds, $1.7 billion transferred funds, $.8 billion from new revenue, $.6 billion from the Rainy Day Fund and an ending fund balance of $.25 billion.

The recession is just part of the reason. More people are needing services like Medicaid, health care costs are rising, the prison population is growing, more children are enrolling in public schools and there are increasing state employee pension obligations. We lost $7.8 billion in expected state revenues because of low consumer spending, home values and sales dropped as well as other factors.

Our economy is improving, but at a very slow rate. It will take a few years before we can rebound from this. Currently our state's revenue is comprised 44.7% from taxes, 27.6% from federal grants, 24.7% from charges and miscellaneous revenues and 3% from licenses, permits and fees.

Governor Gregoire is approaching this upcoming budget using Priorities Of Government (POG). This budget process starts with a zero-base new budget. Each piece of the budget will be looked at as to whether it should be in the state's budget based on several criteria in three categories:

FISCAL RESPONSIBILITY
1. Is the activity an essential service?
2. Does state government have to perform the activity or can it be provided by others?
3. Can the activity be eliminated or delayed in recessionary times?
4. Does the activity need to be paid for with state general funds? Should users pay a portion of the cost?
5. Are there federal funds or other fund sources available to support this activity?

EFFICIENCY
6. Are there more cost-effective, efficient ways to do the activity?

PERFORMANCE
7. Can the activity be the subject of a performance contract?
8. Can the activity be the subject of a performance incentive?

Governor Gregoire is seeking public input on the budget. She has arranged to hold four public meetings in Tacoma, Everett, Vancouver and Spokane to ask for suggestions on ideas citizens may have regarding areas where money could be saved or work done more cost-effectively. The public is invited to share ideas at transformwabudget.ideascale.com.

Once an idea is posted on the web site, citizens can vote whether they support that idea or not. The ideas with the most votes rise to the top, which will help the Governor as she creates this next budget. Some ideas are fairly broad, such as welfare reform. Others are specific, such as not requiring a front license plate.

Be involved! If you have an idea, submit it. You could help save a program important to you with your suggestion of how to do it more efficiently or by suggesting somewhere to cut spending not needed right now.

Developmental Disability advocates are drafting efficiency ideas to present to members of the Governor's Committee on Transforming Washington’s Budget. If you have ideas that will help preserve services important to individuals with developmental disabilities and their families let us know. Remember, change is made by those who show up. Let your voice be heard!

House Human Services Work Session on Autism

2010-06-22T09:29:00.000-07:00

On June 16, 2010 the House Human Services held a work session to examine the current strategies and best practices for diagnosing and providing services for persons with autism and their families and will look at how other states have addressed autism and its increased rate of diagnoses. Presenters included Dr. Wendy Stone, Director of Autism Center, University of Washington; Dr. Charles Cowan, Medical Director Seattle Children's Autism Center; Maria Nardella, MA, RD, CD, Manager, Children with Special Health Care Needs Program, Washington Department of Health; Dr. Glenn Tripp, Medical Director, Developmental Behavioral Pediatrics, Mary Bridge Children's Hospital; Diana Stadden, Policy and Advocacy Coordinator, The Arc of Washington State; and Dawn Sidell, Executive Director, Northwest Autism Center.

TVW has uploaded video of the hearing on their website. You can access it via the links below. Also included is a link to the committee website where a PDF version of all the PowerPoint presentations can be accessed.

Please click here to watch video or paste this url into your browser address bar:
http://www.tvw.org/media/mediaplayer.cfm?EvId=2010060078

Committee meeting documents are available online:
http://www.leg.wa.gov/House/Committees/HS/

The committee was very receptive to the information shared and were very clear that they expect some agency requested legislation regarding autism concerns from the Department of Health for the upcoming legislative session. It is clear that we do not have an accurate way of documenting how many people in Washington State have autism.

The work of the 2005 Caring for Individuals with Autism Task Force was discussed and it was disappointing to report that only one recommendation from the task force had been accomplished, that being the creation of an Autism Guidebook for Washington State. The book is very beneficial and addresses issues from birth through the lifespan, but there is no funding to print more copies of it. Because of the task force work, we were able to receive a grant from the Federal Combating Autism Act and now have an Autism Advisory Council looking at issues surrounding children with autism (it does not look at adult issues).

The Arc of Washington State is compiling possible ideas for legislation that will benefit families with autism. Ideas range from providing specific autism interventions such as Applied Behavior Analysis (ABA) to family supports such as Parent to Parent and additional Home and Community Based Services waiver openings. You are encouraged to offer your ideas for legislation in the comments box below.

Diana Stadden
Parent of a 17 year old with autism
Poicy & Advocacy Coordinator
The Arc of Washington State

HR 1255 - What is it really about?

2010-06-18T12:46:00.000-07:00

The Arc of Washington State recently posted an Action Alert at http://capwiz.com/arcwa/state/main/?state=WA where we encourage you to call and email your congressional leaders.

Here is the summary written by the Congressional Research Service for HR 1255:

"Prohibits any entity that receives funds from the federal government from using them to file a class action lawsuit against an intermediate care facility for the mentally retarded on behalf of any facility resident unless the resident (or the resident's legal representative), after receiving notice of the proposed class action lawsuit, has the opportunity to elect not to have the action apply to the resident."

The National Disability Rights Network (NDRN) opposes this bill and is also encouraging people to contact congressional leaders and ask them to oppose it. The bill is the same one that was brought forward in 2007 (HR 3995) and it died in committee then.

On the surface, this bill would appear to be protecting the individual with a developmental disability. In reality, this bill would greatly limit the ability of protection and advocacy agencies to bring class action lawsuits regarding institutions for people with developmental disabilities. It would allow guardians and other representatives to “opt out” a resident from a class action.

The best interest of the individual with a developmental disability is not always served by the guardian, particularly when some attorneys make money by being the paid guardian for 20, 30 or more people living in institutions. It is less work for these paid guardians to keep their clients in an institution than to have to oversee services provided in the community.

The 2009 Facilities Closure report (one of many) commissioned by our legislature recommended that Washington close all but a few RHC beds by 2019 and convert Lakeland, Fircrest, and Yakima Valley into three small community support centers. Each center would have clinical expertise to support people with autism and their families. These three centers would also retain a small number of beds to honor the state’s commitment to allow people and their families to age-in-place.

The Olmstead Decision in 1999 affirmed the right of individuals with disabilities to live in their community and not be required to live in institutional settings. The 'integration mandate' of the Americans with Disabilities Act requires public agencies to provide services "in the most integrated setting appropriate to the needs of qualified individuals with disabilities." It is a violation of an individual’s civil rights to institutionalize them because it is easier for the guardian. We must look at what is the least restrictive environment that allows individuals to participate in community activities, be employed and be provided the freedom and opportunities that every other Washingtonian enjoys.

Advocating for full community participation for all,
Diana Stadden

As a follow-up:

I received this clarification from NDRN staffer Eric Beuhlmann responding to the Developmental Disabilities blog criticizing the above blog entry:

“Where the legislation clearly restricts the choice of the individuals with disabilities is where their choice differs from their legal representative. Because the definition of legal representative is pretty broad, it can cover situations where the individual is capable of making their own decisions, but because of the legislation that choice will be overridden by the choice of the legal representative to opt out.”

Additional follow-up:
A letter of opposition to HR 1255 was sent to Barney Frank and signed by organizations of the Consortium for Citizens with Disabilities (CCD). This letter is posted on The Arc of Washington's web site at http://www.arcwa.org/news_events.htm

August 19, 20101 update:
ABA passes resolution opposing Barney Frank’s HB 1255

On August 10, 2010 American Bar Association (ABA) House of Delegates approved a resolution creating a policy in support of the national protection and advocacy system at the ABA Annual Conference in San Francisco, CA. Specifically, their new policy “supports the reauthorization, funding and authority of the Protection and Advocacy System (P&A) and related programs of legally based advocacy services protecting the rights of persons with disabilities and opposes legislation that would place limits on class actions on behalf of persons with disabilities beyond what is required under the Federal Rules of Civil Procedure.” DisAbility Rights Washington is the Governor designated protection and advocacy system for Washington state.

The resolution is considered timely by disability rights activists because Rep. Barney Frank is currently sponsoring House Bill 1255 which would place a limit on class action lawsuits brought by P&A agencies. HB 1255 is supported by the Voice of the Retarded and other advocates in favor of maintaining large institutional setting for people with developmental disabilities. For more information regarding Rep. Barney Frank’s bill follow the first link below. For more information regarding the ABA House of Delegates follow the second link.

http://www.abanet.org/leadership/house/home.html

The "Other" Washington

2010-04-22T15:51:00.000-07:00

Last week I attended the Disability Policy Seminar in Washington DC, the "other" Washington. The Arc of the US and five other organizations who advocate for individuals with developmental disabilities sponsored the seminar which wrapped up with a day of visits to congressional leaders in our nation's capitol.

The seminar provided fact sheets on a variety of issues. You can view them at www.disabilitypolicyseminar.org (click the General Info tab, then Attendee resources). You will find other useful information on this site too.

Here in Washington State, self advocates worked very hard and got the Respectful Language bill passed, which replaces the phrase "mentally retarded" with "intellectual disability" in all state language. In the "other" Washington they call this bill "Modernization of Disability Terminology". It essentially does the same thing at the federal level. There are two identical bills, S. 2781 (Rosa's Law) in the Senate and H.R. 4544 (Elizabeth A. Connelly Act) in the House. Contact your congressional representatives and ask them to support these important bills.

Other issues we discussed with congressional staff included thanking them for Health Care Reform, Long Term Services and Supports Provisions in Health Reform, Employment, Direct Support Workers, the 2011 Budget and Appropriations including continuing the increase in the FMAP, the D.D. Act, Education, the ABLE Act, Housing and Autism. You can learn more about these issues at the web site listed above.

Maria Cantwell was very gracious. She listened intently as Mike Raymond, a self advocate in our group, talked about growing up in Rainier School (one of our state's institutions). With tears in his eyes he told her the reason he hates the "r" word so much is because that is what the staff there would call him all the time. He asked her to please pass the bill like he helped do in our state.

It was a great trip and our group was glad to have the chance to thank congressional leaders for their work on passing the health care bill and to advocate for the programs and services most important to them.

On a final note, while we were in Washington DC our legislature at home finally passed a revenue package and a budget in the last days of the special session. Advocates for developmental disability issues were pleased that the final budget provided the funding for most of the services they were fighting to keep intact. Although the budget has not yet been signed by the Governor (where there is always the possibility she could veto part of it) you can see what was in the final budget the legislature passed as well as the bills that made it through the process at http://www.arcwa.org/leg_session.htm

Next year promises to be another difficult budget year so the time to start preparing is now. Thank you to everyone for your advocacy!

Diana Stadden
The Arc of Washington State
Advocacy Partnership Project

Olympia Insider March 31, 2010

2010-03-31T14:47:00.000-07:00

Not done yet?

March 11th was supposed to be the final day of legislative session. If you walk around the capitol campus it seems like session is over and everyone has gone home, but looks are deceiving. Because the House and Senate had not reached an agreement on the final budget and the revenue package to pay for it, the Governor called for a special session and asked legislators to finish their work within seven days. However, once a special session is called, the legislature can stay in session up to thirty days, despite the Governor’s request.

We are now in week three of the special session. Most legislators have been sent home except for occasional floor activity to vote on bills Necessary To Implement the Budget (NTIB). During a very difficult time for our state financially, the public is questioning why there has been no agreement, especially with a one-sided supermajority, but it is difficult to get agreement on issues such as raising taxes during an election year. The cost of holding a special session runs about $18,000 a day, though some legislators have declined to be paid, so it is running about $14,000 a day.

There is not much advocacy that can be done right now. Most lobbyists have packed up and gone home and are just waiting for some final word. The sticking point is in the revenue package. The Senate wants to include a .2% sales tax and the House will not agree. The Governor is now warning legislators that if they do not come to an agreement by the end of the special session, she will be forced to make a 20% cut across the board. Keep in mind that about 70% of the budget is protected by our state constitution or by federal rules attached to matching funds. This leaves Human Services programs as an area most likely to take the cuts.

There have been some amendments made to the proposed budgets such as $25,000 for DSHS and the Department of Health to do a review of all aspects of a fiscal note for the autism insurance issue. You can find the Governor/House/Senate proposed budget side-by-side with the amendments on our web site at http://www.arcwa.org/state_budget.htm

Some good ideas have been signed into law.

Many of the bills that affect individuals with developmental disabilities did not make it through the legislative process. We are down to one page of legislation that did make it through, most of these bills have been signed by the Governor now. You can check out our Bills of Interest and the status of bills at: http://www.arcwa.org/leg_session.htm

What can you do to help?

These are long, difficult days for legislators who must make hard decisions and will never make everyone happy. Let your legislators know you appreciate their dedication and ask them to come to agreement on the revenue package so our programs don’t have to be slashed.

If you are not already signed up on The Arc’s Action Alert system, get connected. Once a final budget is approved we will share the information via an Action Alert and on our blog at http://arcofwa.blogspot.com You can also receive quick updates via a “tweet” from our Twitter account ArcofWA. Did you miss something during the regular session? Check out the Olympia Insider website (www.olympiainsider.org) for the podcasts of the session activities. Remember you can download these to your video-enabled handheld devices!

Change is made by those who show up, sometimes showing up means waiting, but it makes a difference!

Diana Stadden
Arc of Washington State
Advocacy Partnership Project

Olympia Insider March 1, 2010

2010-03-08T11:29:00.000-08:00

House and Senate amended budget proposals good to people with developmental disabilities.

Both Senate and House budget proposals were released last Tuesday. Public hearings were held with lots of input provided to legislators. For individuals with developmental disabilities, the House cut very little in community services for people with DD, but we had work to do in the Senate, as there were some significant cuts in their budget proposal. The budget bills were scheduled for “executive session” where Ways and Means committee members can propose amendments to the budget before it is passed to the chamber floor for a vote of all members. Senators proposed several amendments which not only restored some of the cuts in the original budget bill, but also restored funding for the self-advocacy programs and Parent to Parent programs that were eliminated last year. You can find the chart at http://www.arcwa.org/state_budget.htm

The Senate budget proposal calls for the close of Frances Haddon Morgan Center. One of the proposed amendments which had bipartisan support in the Senate was to direct DSHS to report to the legislature by the end of this year on the closure of additional Residential Habilitation Center (RHC). The House budget proposal calls for the closure of one cottage at Rainier and the assessment of all RHC residents to determine alternative placements.

Now we must watch and make sure legislators hold fast to the DD funding proposed as they merge their final budgets.

Bills are nearing the end of their journey.

Friday was the final cut-off for bills to be voted out of the second phase of their journey. If any amendments were added to a bill in the chamber that just passed them, they now need to return to their “house of origin” to see if those legislators will agree with the amendments added. Once both chambers agree on the language of the bill it moves to the Governor’s office for her signature. To see the status of the bills currently, check out our Bills of Interest at: http://www.arcwa.org/leg_session.htm

What a great Advocacy Day Rally!

Despite the wind and rain, the Independent Living Day Rally had a great turnout. Huddled together, sharing umbrellas, more than 400 people showed up to voice their support of providing services for individuals with developmental disabilities in their local communities.

Community advocates also made sure legislators know that they support the legislature in restructuring the Residential Habilitation Centers in our state with the closure of Frances Haddon Morgan Center and particularly are grateful to Senator Hobbs, who added an amendment to the Senate budget that directs DSHS to close an additional RHC.

For our last Advocacy Day of the session, Ed Holen provided information about the revenue packages being proposed so that advocates would have a better understanding of what legislators are looking at as they attempt to keep from having to make cuts to programs for those with developmental disabilities in the community. Advocates who attended the last Advocacy Day also received a 2010 Advocacy Day pin as a thank you for all their hard work this session as well as pizza and cookies. “Great Job!” to everyone who has participated in Advocacy Day this legislative session. We’ll be back again next year, ready to make our voices heard again.

What can you do to help?

Thank you cards are really appreciated by legislators. Please remember to thank them for the work they are doing. These are long, difficult days for legislators who must make hard decisions and will never make everyone happy. Let your legislators know you appreciate their dedication.

Don't forget to check the Olympia Insider website (www.olympiainsider.org) for the new podcasts and to subscribe using iTunes or another RSS tool in order to be notified automatically when something new is posted. Remember you can download these to your video-enabled handheld devices!

Episode 9: Coming Home to the Community
Parents, care providers, and people with disabilities from around the state gathered on the capitol steps to celebrate independent living and advocate for the community services that make true inclusion possible.

Episode 10: The Final Stretch
In the final days of the 2010 session, advocates gather for one last Advocacy Day briefing before heading to the capitol with thank you notes and powerful messages for legislators still debating budget details.

Change is made by those who show up, thanks for being here this year, your voice was heard!

Diana Stadden
The Arc of washington State
Policy and Advocacy Coordinator

Olympia Insider February 21, 2010

2010-03-08T10:13:00.000-08:00

House and Senate budget proposals will be released this week.

The House budget proposal will be released Tuesday morning with the public hearing for it at 6 pm that same day. The Senate budget proposal may also be released on Tuesday, but a hearing for it has not yet been scheduled. If you want a voice in how the state spends its funding and which taxes are raised for what, now is the time to make your voice heard. As each chamber releases its budget we will update our budget side-by-side with the issues affecting those with developmental disabilities. You can find the chart at http://www.arcwa.org/state_budget.htm

SSB 6130, which temporarily suspends the two-thirds vote requirement for tax increases in Initiative Measure No. 960 through July 30, 2011, passed both houses, allowing the legislature to save some programs through increased revenue instead of just eliminating programs. Sources of revenue suggested by the Governor in a tax plan she released last week include “sin” taxes on things such as cigarettes, candy, bottled water, things people choose to buy but are not necessities. Read the Governor’s letter and see the proposed tax changes at:
http://www.governor.wa.gov/priorities/budget/package_20100217.pdf

Other revenue suggestions have included raising sales tax across the board and eliminating tax loop-holes. We will watch to see which suggestions the House and Senate propose.

Halfway through session, only a third of bills we are tracking are still alive.

Last week we passed the deadline for bills to make it through their first round of committees in the chamber they originated in. Those that made it through their “House of Origin” now go through the process again in the other chamber. Most will start in the policy committee, then go to the fiscal one if there is money attached to it. The House cut-off is February 23rd for policy committees and February 25th for fiscal ones. The Senate policy committee deadline is February 26th and their fiscal committee deadline is March 1st. March 5th is the last day for bills to get passed in either chamber. The chart of bills we have been monitoring now has one page of bills that are still alive and two pages of bills that died. To see the status of the bills currently, check out our Bills of Interest at:
http://www.arcwa.org/leg_session.htm

This Wednesday is the big Advocacy Day rally!

This Wednesday, February 24th, is the Independent Living Day Rally. Last year we had over 700 people attend the rally. Our goal this year is to get at least 1,000 people there. If you still have your scarf, don't forget to wear it this week. A limited supply of scarves will be handed out to advocates at the rally so plan to attend this Wednesday. Help legislators recognize our blue scarves signifying the need to fund community services as our choice (currently the only state funded choice is a Residential Habilitation Center or RHC). To learn more about Advocacy Day go to http://www.arcwa.org/advocacy_day.htm

What can you do to help?

Please remember to thank legislators for the work they are doing. They are getting a lot of negativity from people who don’t want to have taxes raised. The reality is that 70% of the state budget protected by our constitution or by federal rules, the only real place to cut is in human services. These are long, difficult days for legislators who must make hard decisions and will never make everyone happy. Let your legislators know you appreciate their dedication.

Announcements for the Olympia Insider issues, the Olympia Insider Podcasts and Action Alerts are sent via The Arc of Washington State Action E-list at http://capwiz.com/arcwa/state/main/?state=WA You can sign up there and the e-list makes it very easy for you to let your legislators know what is most important to you. When bills or budget items need emails or phone calls targeted to your legislator you will receive an email with basic information about the issues and a suggested email you can revise or just send that will go directly to your legislator from you with just the click of a button.

Watch for Action Alerts on the budget this week. Your voice will be important as legislators come down to these final weeks. Legislative session ends on March 11th. You can also use letters, phone calls, email and personal visits to make sure your opinions on the bills or budget items you are most concerned about are heard. This week’s budget proposals and their public hearings will be critical to what services will continue and what programs will be eliminated, your legislators need to hear from you.

Don't forget to check the Olympia Insider website (www.olympiainsider.org) every week for new podcasts, and to subscribe using iTunes or another RSS tool in order to be notified automatically when something new is posted. Remember you can download these to your video-enabled handheld devices!

Episode 8: Budget Priorities - Director of Financial Management, Victor Moore sits down with the Olympia Insider to discuss budget priorities and the good financial sense of bringing people with developmental disabilities home to their communities, neighborhoods and schools.

Change is made by those who show up, in person, by phone or by email.

Diana Stadden
The Arc of Washington State
Policy and Advocacy Coordinator

Olympia Insider January 22, 2010

2010-01-25T16:10:00.001-08:00

It’s a flash flood of legislation.

Things are moving fast in this very short session. Many bills have been introduced, already had a hearing, and been passed out of their committee, waiting for a floor vote to move to the other chamber and go through the process again. Some of the bills are wonderful ideas such as changing language in state law (HB 2490) and recommending Congress do the same (HJM 4024) to eliminate the “R” word. HB 2801 expands tools, information & strategies for anti-harassment in public schools. There are other bills protecting vulnerable students and vulnerable adults as well as protecting individuals with developmental disabilities from becoming homeless when they leave a Residential Habilitation Center.

Some bills are a bad idea such as HB 2955, which would require a means test (income limit) for families receiving services through the Individual and Family Services program. This program provides respite to families caring for a loved one with developmental disabilities at home. It also helps pay for some therapies and in-home modifications. Means testing has been tried before. It saves no money and uses valuable case manager time to collect and evaluate family incomes.

It is also inequitable for families who choose to care for their child at home to be means tested for this small amount of support when families who choose the state Residential Habilitation Centers for their child (at a much higher cost to the state) are not means tested. You can help stop this bill by calling committee members now. Check out the Action Alert at http://capwiz.com/arcwa/state/main/?state=WA

The deficit is still a huge question.

We still are facing at least a $2.6 billion deficit. The Economic & Revenue Forecast Council will meet on February 12th for the next revenue review. The House and the Senate budget staff are working hard to decide which recommendations from the Governor’s budget proposals they will want to keep and what other ideas they may want to include instead. Keep posted for their budget proposals. There are still many areas in the DD budget that are proposed to be eliminated or reduced by the Governor that it is important to advocate to protect now so they don’t end up in the final budget. To see a more comprehensive chart of the Governor’s proposed budget go to http://www.arcwa.org/state_budget.htm

Advocacy Days are here again!
The Thirtieth Annual Disabilities Legislative Reception was held last Wednesday evening in Olympia. The Autism Society of Washington held their annual Autism Awareness Day earlier that day with a record attendance. Several legislators spoke about their support for individuals and families with autism, families shared personal stories and individuals on the autism spectrum rallied the crowd as well. A brief summary of current developmental disability issues was also well attended that afternoon with many new faces coming to Olympia that day. Individuals with developmental disabilities, their families and their providers wanted their concerns to be heard.

This Wednesday starts the 2010 Advocacy Days. Last year blue scarves were provided at the Independent Living Day rally to advocates for developmental disability services in the community. If you still have your scarf, you are encouraged to wear it each time you come to Olympia. If you don’t yet have one try to wear blue colors. Last year we only provided blue scarves to advocates, this Wednesday we will be providing a blue scarf with a “Develop Abilities” button on it to each legislator. Come to Advocacy Day on Wednesday and help us distribute them to legislators.

Many community advocacy groups have pins or buttons that represent their voice. You can help deliver those to all legislators with your personal message and ask them to add the button or pin to their blue scarf. This is a great way to show unity and help legislators recognize the need. To learn more about Advocacy Day go to http://www.arcwa.org/advocacy_day.htm

Make sure to come to the rally on the February 24th Advocacy Day where we will be providing more blue scarves to advocates (there is no cost to you). Last year we had more than 700 rally participants in blue scarves on the capitol steps. This year we want to reach 1,000 participants so plan ahead!

What can you do to help?

The Arc of Washington State has an Action E-list at http://capwiz.com/arcwa/state/main/?state=WA you can sign up for that makes it very easy for you to let your legislators know what is most important to you. When bills or budget items need emails or phone calls targeted to your legislator you will receive an email with basic information about the issues and a suggested email you can revise or just send that will go directly to your legislator from you with just the click of a button.

You can also participate in this process by letters, phone, email and personal visits to ask legislators to make sure that bills or budget items you are most concerned about get heard.

Don’t forget to check the Olympia Insider website (www.olympiainsider.org) every week for new podcasts, and to subscribe using iTunes or another RSS tool in order to be notified automatically when something new is posted. Remember you can download these to your video-enabled handheld devices!

Advocacy Day needs you there because change is made by those who show up!

Diana Stadden
Arc of Washington State
Policy and Advocacy Coordinator

Olympia Insider January 15, 2010

2010-01-16T18:44:00.000-08:00

The 60 day session has begun... don’t blink or you’ll miss something!

In this first week of session there was no time to acclimate. Hearings were scheduled every day, work sessions were held to help legislators learn about issues, public hearings were held on the Governor’s proposed supplemental budget and on various bills. Some bills were even moved out of committee (exec’d) in this first week (HB 2490 Respectful Language).

A bad budget year once again.

Washington State faced an all cuts budget last year to fix a $9 billion deficit. The Governor has released her 2010 supplemental budget which, by law, has to be balanced so it makes critical cuts throughout human services. This is called her Book 1 budget. She also released a Book 2 version this week that “buys back” some of those cuts by proposing revenue increases.

Although there were still many proposed cuts in her budget, she also advocated for some increase in community services based on the recommendations from the Feasibility Study that looked at the consolidation/closure of Residential Habilitation Centers (RHC). She included the study’s proposal to close Frances Haddon Morgan Center and begin downsizing Rainier.

Even more important, she acted on the study’s recommendation to build up services in the community by creating three new State Operated Living Alternatives for children coming out of the RHCs. She also directs the Division of developmental Disabilities to increase the Children’s Intensive In-home Behavior Supports program enrollees back to six children per month instead of the current one child per month in order to prevent further institutional placements of children. In addition, 12 new community respite beds are to be created. Case management and oversight is also provided for those moving out of an RHC.

The transfer of state-only employment clients has continued and the majority of those clients have been transferred to the Basic Waiver. The Governor’s budget allows for 343 graduates from this year to also be transferred to the waiver for their employment services.

The Governor also released a document entitled “Reforming how we care for Washingtonians with Developmental Disabilities” which you can view at http://www.governor.wa.gov/priorities/reform/facclosureDDD.pdf

A partnership of several DD advocacy organizations began a new effort called “We All Belong”. The goal of "We All Belong" is to call attention to items Governor Gregoire proposed in her budget to reform how Washington supports and cares for people with developmental disabilities. You can check out the effort's website at www.weallbelong.org

There are still many areas in the DD budget that are proposed to be eliminated or reduced. To see a more comprehensive chart of the Governor’s proposed budget go to http://www.arcwa.org/state_budget.htm

Bills are flying in and out of committees already.

This first week of session has already seen bills get “dropped” or become bill language with a bill number and be assigned to a committee. There have been a multitude of hearings and two bills in particular have already been heard in committee and have been or are scheduled for executive session. HB 2490, sponsored by Representative Angel, concludes action from HB 1835 last year that directed the Code Reviser to determine where derogatory words such as “mentally retarded” could be replaced with “intellectual disability” in state language. The bill was heard in the House State Government committee and was “exec’d” or approved and passed on to the next committee that same day. SB 6423, sponsored by Senator Fairley, revises language concerning RHCs so that we do not have to keep all five RHCs permanently open. It was heard in the Senate Health & Long Term Care committee and is scheduled for Executive Session next week.

To see all the bills we are tracking throughout the legislative session and see their status go to http://www.arc wa.org/2010_Bills_of_Interest.htm

Advocacy starts this week, get ready!

The Thirtieth Annual Disabilities Legislative Reception will be held on Wednesday, January 20, 2010 at the capitol building in Olympia. This event is designed to bring legislators and their constituents from all over Washington together to discuss issues important to the disability community. Be sure to call your three legislators’ offices and tell them you will be there and ask them to attend. Legislators are much more likely to attend if they know they will have constituents there to talk with. You can find your legislator’s phone number by going to www.leg.wa.gov and click on Find Your Legislator.

A rally for autism issues will take place on the Rotunda in the Legislative Building at 11:30 am that day. A brief summary of current developmental disability issues will be provided in the afternoon across the street from the capitol at The United Churches at 2:30 pm. Go have dinner after the briefing, then join us at 5:30 pm for the Legislative Reception in the Columbia Room on the first floor of the Legislative Building. For more information call toll free 1-888-754-8798.

What can you do to help?

The Arc of Washington State has an Action E-list at http://capwiz.com/arcwa/state/main/?state=WA you can sign up for that makes it very easy for you to let your legislators know what is most important to you. When bills or budget items need emails or phone calls targeted to your legislator you will receive an email with basic information about the issues and a suggested email you can revise or just send that will go directly to your legislator from you with just the click of a button.

Advocacy Day will begin on Wednesday, January 27th. Last year we made a show of force in blue with our blue scarves denoting support for developmental disability issues. If you still have your blue scarf from last year, please bring it and wear it anytime you come to the capitol. If you don’t have a blue scarf you can wear blue colored clothing.

On the first Advocacy Day we will be delivering a blue scarf to each legislator. Many community advocacy groups have pins or buttons that represent their voice. You can deliver those to all legislators and ask them to add them to their blue scarf. February 24th will be the Independent Living Day Rally where we hope to provide another huge crowd of blue for legislators to acknowledge. A limited quantity of blue scarves will be available for advocates at the rally.

You can also participate in this process by letters, phone, email and personal visits to ask legislators to make sure that bills or budget items you are most concerned about get heard.

Come join us for the Legislative Reception and other activities on January 20th because change is made by those who show up!

Diana Stadden
Arc of Washington State
Policy and Advocacy Coordinator

Can there be good in a bad budget year?

2009-12-24T14:45:00.000-08:00

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 http://www.arcwa.org/pdf/2010charts.pdf)

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 http://www.governor.wa.gov/priorities/reform/facclosureDDD.pdf

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

Home Sweet Home by Guest Blogger Joy Caldwell

2009-11-20T14:47:00.000-08:00

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 http://paulandjgcaldwell.blogspot.com)
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.

Another budget shortfall, what will they cut now?

2009-09-18T15:06:00.000-07:00

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 http://capwiz.com/arcwa/state/main/?state=WA 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

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

2009-09-02T14:23:00.000-07:00

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

Tours for Legislators - Show Them Community

2009-08-21T12:16:00.000-07:00

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.

Preliminary analysis of Initiative 1033

2009-08-11T09:37:00.000-07:00

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: http://www.budgetandpolicy.org/

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.

National Health Care Reform – For Better or Worse?

2009-07-25T18:08:00.000-07:00

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 http://help.senate.gov/) 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

Communication Using the Latest Technology

2009-07-19T17:53:00.000-07:00

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

Did my advocacy do any good?

2009-07-14T19:44:00.000-07:00

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

Freedom and Independence - Still needed for All

2009-07-05T17:12:00.000-07:00

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 http://www.ieccil.org/ and click on Independent Living History. For Washington State's history go to http://arcwa.org/history.htm

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.

What is The Arc of Washington State?

2009-06-28T10:28:00.000-07:00

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