“Real Life”

In a recent thread in the LinkedIn group “Intellectual Disabilities Support Professionals” there has been a heated “discussion” regarding inclusion.  There is one very outspoken and prolific writer who regards anything but independent living supported by his agency as being “groomed for a systems lifestyle” to be “segregated, isolated and warehoused in institutions”  He calls himself an advocate but has disdain for anyone one who needs extra supports which may not be available in his type of community.  He refers to people who have higher support needs as not having “real lives” because they may live in a supportive community, an intermediate care facility, or group home.  He refuses to listen to others and abrasively dismisses any viewpoint other than his own and that of his agency.  Needless to say, his writings are tiresome, repetitive, derogatory, one-sided and void of understanding of the complexity of the “real” situation.

It’s really a shame because this person is passionate about his advocacy but is unable to see or appreciate alternatives and the fact that the population of people with intellectual disabilities is very heterogeneous.  The researchers are now beginning to realize that “one size does not fit all” and most of the research has focused on those who have a fairly good command of language complexities and those who only have a developmental disability not people with  intellectual disabilities.

“Operational definitions of self-determination have moved beyond simplistic versions that focused almost solely on choice making to take into account cultural differences and the fact that different people desire to have differing amounts of personal control over specific areas of life that they view as important.” ( Wehmeyer and Abery, 2013)  These authors also point out that future research needs to better account for the fact that self-determination “is exercised within the context of relationships (with people, organizations, systems, etc.) and that as a result, relationship factors need to be taken in to account.”

My son Thomas is 20 years old and lives in a supportive community which many would call an “institution”.  He calls it home.

Thomas is very self-determined making many choices which are important to him.  He lives in the community in which he grew up and enjoys events all around the region.  He is extremely good at planning what he wants to do and filling us all in on the local events around town.  He is a wealth of information.

 It’s absurd to think that Thomas doesn’t live a “real life”

The LinkedIn writer I spoke about says that people in institutions are groomed for systemic segregation, are warehoused and isolated never to be seen again – he certainly has no idea about “real life”

Below are photos from just a few of the choices that Thomas has made this summer

Thomas attends mass weekly at Blessed Sacrament Church in Seattle, Washington.  He was baptized in this church and has gone here his whole life.

Thomas at mass

Thomas at Blessed Sacrament

Thomas attended a Mariner’s game and had to get his photo take with the Dave Niehaus statue

Thomas at the Mariner's game with Dave Niehaus statue

Thomas met with two of his most favorite people – his friends Gretchen and Kelly

Thomas with Gretchen and Kelly

Thomas loves to go out to eat – he has chosen Kidd Valley, The Northgate Food Court,  Piroshky Piroshky, Taco del Mar and Panda Express as his most frequent places this summer

Thomas at Kidd Valley Eating at Northgate Mall - Piroshky Piroshky

He attended the “Sounds of Summer” concerts at University Village – something he does every summer.  He is well recognized there as he is the first one up to dance and chats with the band members.

Thomas at Eldridge Gravy and the Court SurpremeThomas at Hit Explosion

Thomas at University Village

Here are some video clips of parts of the concerts

He attended day camp at Woodland Park through the Seattle Parks – another annual favorite!

Daycamp 2014

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and he organized an “All Star” Pizza Party  at our house

Thomas clapping for All Stars Thomas at All Star Party

Movin’ for Money – Specialized Programs

Two great opportunities to support the Seattle Parks and

Recreation Specialized Programs

 

 

 

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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!

 

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.