Category Archives: Community Events

Movin’ for Money – Specialized Programs

Two great opportunities to support the Seattle Parks and

Recreation Specialized Programs

 

 

 

GiveBIG2013_color_date

Moving for money small

 

 

 

 

 

 

 

 

 

 

If you are unfamiliar with Specialized Programs, let me tell you that this is the best opportunity around for not only the participants but for the families too.  The staff is knowledgeable and specially trained, stable and returns year after year for the annual summer camps – both the day camp and overnight camp.  Even though this program is not funded and supported by the Division of Developmental Administration  it is the best respite for families and also very affordable.

It is affordable because the Advisory Council and others raise funds to support our programming.  It is critically important to us to keep the cost affordable for our participants and their families and we can only do this with your help. Please consider helping support these programs, many of which have waiting lists to get in or are full to capacity, by sending a tax-deductible donation for our annual Movin’ for Money event.

 

Movin for money photo

 

There is a variety of programming, both for youth and adults, which cover recreational, athletic, life skill building, social and community events.  The annual day camp at Woodland Park and the summer overnight camps at Camp Long are anticipated with enthusiasm every year.

Below are some places that the youth have gone to this year in the Saturday Activities program:

Outback Kangaroo Farm - Feed llama’s and roo’s – hold a baby Joey and see animals from down under.

Skagit Valley Tulip Festival – See the beautiful rainbow of tulips and ride a wagon through fields of rainbows.

Special Olympics Track Meet

Kelsey Creek Farm and Sheep Shearing – watch the interesting art of sheep getting a haircut.  Animal viewing and wagon rides.

Storybook Theatre – “Rapunzel”

Hike, Bike and Boat – explore the Sauk River Trail, learn from the Fern Fairy and the Hiker Dude, ride adaptive bikes.

M-Bar C Ranch – ferry ride to Whidbey Island and horseback riding with a BBQ lunch.

 Winter 2013 Catalog of Programs

Spring 2013 Catalog of Programs

Please help support our programs to enable as many people as possible to attend these great programs!

 

Let Your Voice Be Heard

The National Council on Disability (NCD) is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities.
NCD’s quarterly meetings are open to the public. People and organizations that represent the interests of people with disabilities are encouraged to attend these meetings, in person or by phone. The next NCD meeting is April 22 – 23, 2013 in Washington, D.C. The focus of this meeting will be NCD’s future “Policy Roadmap.” Families living in the D.C. area are encouraged to attend in person or you can join the meeting by phone (download the agenda, with location and phone details, here).

 

Next Phone & In-Person Public Comment Opportunities

April 22 – 23, 2013 during the NCD Quarterly Meeting

NCD will host two open public comment periods at its upcoming quarterly meeting on April 22-23, and we’d love for you to share your insights with us about emerging issues or other concerns on which you believe NCD should focus its attention.

For the two open public comment periods, statements will be received on any topic on a first-come, first-serve basis by phone and in-person. The first 30-minute open session is Monday April 22, from 4:45 P.M. until 5:15 P.M. ET and the second open session is Tuesday April 23, from 11:45 A.M. until 12:00, noon ET.

On Tuesday, April 23, NCD will hold an additional public comment period from 9:30 – 10:00 A.M. ET, reserved for in-person comments only regarding recommendations for NCD’s engagement on the UN Convention on the Rights of Persons with Disabilities (CRPD).

If you are interested in giving public comment, you will be asked to provide your name and organizational affiliation, if applicable, and to limit your comments to three minutes so we can hear from as many people as possible (for this reason, it’s advisable to write out what you intend to say).

NCD’s quarterly meeting is open to the public, and interested parties may join in-person or by phone in a listening-only capacity (with the exception of the public comment periods) using the following call-in number: 1-888-727-7630; passcode 5450168. If asked, the call host’s name is Stacey Brown or Jeff Rosen.

You may also provide public comment at any time by sending your comments in writing to Lawrence Carter-Long, Public Affairs Specialist, at LCarterLong@ncd.gov, using the subject line of “Public Comment.”

 

NCD April 2013 Meeting Agenda

 

Our Families need RESPITE

Many, many families can be helped with just a little bit of stable, reliable respite.  Please support HB 1546

There are options that need to be looked at so that families can receive respite – it is not enough to just add hours without finding a way to provide that respite to families. Families who are already eligible for respite hours do not have enough providers.  We need to look at ways to improve the system to make respite accessible and reliable for families.

When respite providers make little more than a babysitter (this may not be true – a teenage babysitter may make more than a respite provider who is providing care to adults and children with challenging special needs) it’s no wonder that families cannot find or keep a provider.

What happens is families stay home to provide care for their child.  Typically, when your child develops and grows, when they are teenagers you are able to leave them alone for awhile.  Not so with our families.  We need to be there when our child comes home on the bus.  We need to be there all afternoon and evening.  Jobs are lost, opportunities for siblings are lost.  It’s not just watching them – it’s making sure they are toileted, making sure they have something to eat, making sure they are safe, making sure they have their medications and more.  It’s being attentive and involved in their care and well-being, keeping them active and engaged, interested in activities and helping them along the way, giving needed supports.

Without respite our families are becoming socially excluded – isolated from community.  This is not what the inclusion movement was intended to do but it has become the reality for many families.

One mother testified very frankly to the DD Service System Task Force on October 23, 2012.    You can hear how grateful those who are able to have respite are and also the difficulties they face and will continue to face with our current system in place.

Please take a look at other options:  in-home or facility based are not the only options available.  Many more could access respite if DDD partnered with schools, community centers, city park and county park departments.  The Seattle Parks and Recreation Specialized program is the program that I am most familiar with.  This program has been the best respite for our son – not only providing stable, reliable care with experienced providers in working with the DD population but they have provided many group activities, experiences and outings that we would never have had the energy to do.

With this center-based or activity based respite  (although it was not paid for by respite hours – we paid for it) was the best option for not only our son but our family.   Specialized Programs also offers day camps and overnight camps every summer.  Every year we see staff members return to take part in these events.   It would be wonderful to develop more programs such as this to provide stable respite care with trained providers for our most vulnerable populations.

By utilizing a center based respite we could pay the providers more than minimum wage which would add to provider stability,  have transportation to and/or from school for after school respite, provide respite right in the community, provide meaningful activities, have staff support (thereby not relying on one person to show up at your house – we have all experienced the unreliability of this situation which only adds to the family’s stress) and there are more eyes on everyone to help with prevention of negligent care.

By sharing resources and pooling resource the resources will go much further and benefit many more by making these services accessible.

 

 

Alarming? Really?

 

 

Prevent abuse of people with developmental disabilities was the Op-Ed piece in The Seattle Times yesterday written by Sue Elliott, executive director of The Arc of Washington State and Ed Holen, executive director of Washington State Developmental Disabilities Council.  The issues brought forth are not new and I’m wondering why these agencies have not been continually advocating for safe and appropriate care, oversight and investigations all along?  It was clearly evident from the Op-Ed piece Supporting our most vulnerable citizens published in 1999 by these same two authors that these issues were of great concern.  What happened in the past 13 years between these two essays to improve the situation?  Apparently nothing – so what are these agencies advocating for and what is their purpose?

My belief is that these agencies have been led down a misguided path – rather than looking at the person who they are supposedly advocating for they have been advocating for those who gain financially from social experimentations of rapid deinstitutionalization without evidence based studies that this is the best option for some of our most vulnerable citizens.  There seems to be a rule that the data which DSHS and DDD share with these agencies is golden even though it may not make sense.  But because the data supports the agenda of these agencies which are backed by their supporters who will gain financially from this misguided advocacy,   it is used as fact and this is what our policy makers are given to use for legislative purposes.

In my attempts to ask these advocates and other decision makers in our state about the questionable conclusions I have been told may several of the executive directors of Arc chapters in our state that they do not question the information which DDD gives them, they do not ask questions about the sources, they assume the data is correct.

Recently, when I asked to meet with the statewide coordinator of the parent coalitions run by The Arc of King County,  he wrote he had seen my questions and data but did not want to address them.

All I can think is that these people just put their head in the sand and do not want to face reality.  They need to look at the questions asked and answer them, look at the glaring discrepancies and address them – they need to be accountable for their actions and inaction in their advocacy and not blame the legislature.  They are the ones giving the legislature the information and if they give the legislature garbage they will get garbage.

My concern is that many vulnerable people are being hurt by these who claim they care.

 

 

Social Circles, Segregation and Disabilities

The social life of a person with intellectual disabilities is often studied and looked at only from one variable—that of interacting with  others who have or do not have  an intellectual disabilities.  From this model, the  social life is often seen as segregated and isolated with few contacts other than family or paid providers.  There have been some recent postings on various sites about people with disabilities and friends (My Child’s Dream to Have Friends , 51 People) and it made me think more about social circles and who is in them.

This is the reality of the situation when a person needs the assistance of another person to interact with others, to take turns in a game, need verbal or physical cues to manage life skills, to  go out to events or attend groups, go to the store , go to the doctor or any other outing which entails leaving the home and no amount of social engineering will change this.

Rather than focusing on the one variable of disability and looking at all contacts as having a disability or not, try looking at social contacts from various angles—what type of people does one interact with?

When looking at social circles from this perspective I think that one may find that the person with intellectual disabilities is much more integrated with a variety of people from various cultures and walks of life than those of us without disabilities.

How many adult women have equal men and women friends?  How many adults have daily contact with people from many different countries and cultures?  How many adults have daily contact with people from all walks of life—from highly paid professionals (doctors and health care providers) to some of the lowest paid workers in our community  – the  caregivers who  work so hard caring for our loved ones? How many have daily contact with people of all ages from college students to the elderly?

I know that my son  learns about many countries and cultures—he knows and experiences various foods from different countries and knows they may have a different religions.    He notices differences and asks about them but he does not make judgments and discriminate—he accepts things as they are.

All people are equal in his eyes—gay people, straight people, poor people, rich people, Black people, Asian People, White people, people who “talk funny” (have an accent because English is their second language) handicapped people in wheelchairs or needing walkers,  people with multiple tattoos and piercings (people who may look scary to me),  yet my son accepts all people equally.  He does not discriminate.

Yes, my son does notice differences and comments on them—sometimes this is difficult in public because in our culture this is taboo.  He is just observant and wants to know about people.    He has opened my world to meeting people from all over the world who I never would have met except for the fact that he asks everyone “What country are you from?”  If I stayed in my own little world and social circle and didn’t travel with him I would have missed out on these opportunities.

Yes, my son does live in a supportive community with others who have intellectual disabilities but his life is far from segregated—it’s completely the opposite and if one examined their own social circle from variables other than if one is disabled or not, we would see very different connections and realize that those who we may think are the most isolated and segregated are actually quite the opposite.

 

 

Seattle Times “Opinion”

I want to be hopeful but am afraid that nothing will change.  Even though The Seattle Times published an article by Maureen O’Hagan entitled ” State ignoring abuse at group homes “ and The Seattle Times published the editorial “DSHS must investigate alleged abuse at group homes for the disabled” my hopes of reform fade.  We hear that The Arc – Washington State will be advocating with legislators on this.  The Arc-Washington writes “The basis of the problem lies with DSHS. It takes weeks or months for them to respond to reports of abuse and often nothing happens. The Governor proposes to add funding for more investigators.”

This is just “talk” and will amount to “no action” from The Arc, Disability Rights Washington, Washington State Developmental Disabilities Council and other agencies which receive public funds to advocate for this population.  The history is that they use these funds to discriminate our most vulnerable.   In the name of deinstitutionalization these groups have advocated for community inclusion.  What these groups do not understand is that many of these same people already lived in a community – it may have been a different type of community than what the people who run these organizations may choose to live in,  but it is a community for the people who find it supportive, safe and stable.

The mis-placed and misguided advocacy of these groups is also the basis of this problem.  I know that I am not the only one who has attempted to educate these advocacy groups on the issues of unsafe conditions in these group homes or issues of safety and stability.  These groups have not wanted to hear or acknowledge that there were problems.  They wanted to see that moving people from stable and safe supportive communities to individual homes scattered far from their friends and families to be “included” in community was an experiment that was succeeding. They wanted to see “inclusion” and “integration” work.  I do too – the difference is that I see inclusion as being part of the community – community meaning participating, contributing and belonging.  I believe each person can define what that community is to them and they can make a choice.  The misguided advocates do not allow people to make this choice and have defined “community” to mean something else.  Many times the “community” these misguided advocates force upon people does not lead to “inclusion” but to  ISOLATION and IMPRISONMENT.

This experiment failed – many have been harmed or killed.  It’s time to stop this experiment on unsuspecting people. How many of these people provided “informed consent” to this social experiment?

Where is the advocacy for improved oversight, better staffing levels, better pay for caregivers?  These are critical to improving care, safety and stability for all.  Yes, we need investigations but investigations without action will do nothing except waste more money and cause more harm.

 

 

The “unserved” – King County Legislative Forum

The Arc of King County and King County Developmental Disabilities Council hosted the recent Developmental Disabilities Legislative Forum.  The theme of the evening was “The Unserved.”    Yes, this is a huge issue but an even larger issue was the blatant discrimination against our most vulnerable citizens by The Arc of King County and Lance Morehouse, Outreach Coordinator and Advocacy Coordinator King County Parent Coalition, The Arc of King County.

Morehouse refused to allow two groups to speak at the forum stating there were time limits and a change of focus of the forum.  Make no mistake about this – these groups do serve the” unserved” and that is part of their focus but they were denied a chance to speak due to their advocacy for a continuum of care.  The Arc is opposed to any congregate care and therefore discriminates against those for whom this care is the LEAST RESTRICTIVE,  safest and cost effective care for those who chose this type of care.

The Arc of King County receives thousands of county and state public dollars every year for outreach and advocacy, parent training, parent to parent, and many other services.  The Arc uses some of these public funds to discriminate against our most vulnerable, censor information from advocates for a full continuum of care and block information which may be life-saving to some people with DD or their families.

It is time to question these practices which are paid for with public funds.

Below is a link to the letter which I wrote to members of the King County Council and legislators from King County.  I do hope that this issue will be taken seriously and these decision makers become aware of the publicly funded discrimination against our most vulnerable and their advocates.

Letter regarding King County and State dollars to The Arc of King County

Letter from Friends of Fircrest to Legislators regarding their exclusion from the DD King County Forum

Letter from Shoreline Community Lifelong Learning PTSA President regarding denial to inform legislators of this new community group

King County Developmental Disabilities and public funds to The Arc of King County

Homecoming Royalty!

Thomas was chosen by the student body at Shorecrest High School in Shoreline to be part of the Homecoming Royal Court this year.   He is certainly far from being isolated and restricted –

he has flourished from being allowed to grow and learn in the environment which is the least restrictive for him.

When RHC residents move to a community setting, many will need an increase in direct support staff due to the more restrictive environment for them, which will also increase the cost of care.

Moving my son and many others with similar needs from the RHC to a community setting is far from “doing the right thing” and will actually bring restrictions and harm.   “Doing the right  thing” means adhering to the US DD Act and the US Supreme Court Decision Olmstead -


not evicting people from their homes because you don’t like where they live. 

Please continue to allow our loved ones to thrive

in the environment which is the least restrictive

 for them!

Whoa – Senator Kline – Pull back the reins of deinstututionalization!

Senator Kline needs to have someone help him put the brakes on his road to destruction.  He is pushing for deinstitutionalization with no regards to cost or safety of this movement.  In listening to him speak in the DD Service System Task Force it is clear that his intention is to further the deinstutionalization movement, a movement which has already cost at least one person his life this past year from pure negligence, caused crisis in many families  - both those who live in the RHC and those in the community, and will continue to contribute to the crisis unless he is reined in and deprogrammed.

How many of you use a computer which looks like this one?

Or a cell phone such as this one?

If you were going to talk to others about computers and cell phones would you talk about the examples above?  I don’t think so.  I wonder why, then, that Senator Kline and other DD Advocates who push for deinstitutionalization with no regard to cost or appropriate care refer to institutions as this:

This is the photo The Arc uses when they refer to the ICF/ID

This is the photo that Disability Rights Washington uses when they refer to the ICF/ID

The photos below are taken at Fircrest Residential Center in Shoreline, one of our states ICF/IDs.  Do these look like the institutions above that The Arc and DRW speak about?

It’s time that those who are pushing for the deinstutionalizatoin with no regard to cost or care, reacquaint themselves with reality.  Their perceptions are as far from reality today as the computer and phone pictured above are from our computers and phones of today.

 

Please see the page entitled DD Service System Task Force for more information on this critical issue.  

“Volunteer” Opportunity for person with Intellectual Disability – Organic Gardening

 

I am starting a program for vocational training working in organic gardening.  I currently have a small plot of land in the University District of Seattle and am looking for a person who would like to experience various aspects of gardening.

We are very lucky in Seattle in that we are able to garden all year long.  We will be looking at composting, soil building, worm bins, Orchard Mason Bees, in addition to tending the garden and donating food to the University District Food Bank and Teen Feed.

Variable times/days available and flexible.  For more information please contact me.

 

Cheryl

ddadvocacy@gmail.com