Saturday, July 25, 2009

National Health Care Reform – For Better or Worse?

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

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

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

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

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

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

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

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

Stay healthy-
Diana Stadden

Sunday, July 19, 2009

Communication Using the Latest Technology

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

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

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

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

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

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

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

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

See you on the net-
Diana Stadden

Tuesday, July 14, 2009

Did my advocacy do any good?

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

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

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

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

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

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

See you in Olympia-
Diana Stadden

Sunday, July 5, 2009

Freedom and Independence - Still needed for All

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

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

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

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

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

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

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

Until next time,
Diana Stadden

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