Advocacy Concerns

This is an abbreviated version of an open letter to people who oppose inclusion of Residential Habilitation Centers (RHCs) in the continuum of services for our family and community members who have disabilities. I felt the need to write it after receiving an extremely misleading Action Alert opposing HR 1255 (HR1255 provides a process by which parents & guardians, on behalf of their children/wards, may opt out of class action lawsuits with which they disagree.) Also, I found the documentation they provided in response to my questions to misrepresent the Supreme Court Olmstead Decision. Actually, "Olmstead" does not say that anybody is required to live in a specific place. Instead it affirms the right of an individual to live in the setting that best suits him/her - be it a private home, group home, institution. In so doing, it affirms the role of institutions within a full continuum of care.

I respect the energy and commitment that you all have to your causes. What I don’t understand is how, as strong advocates, (personal and representatives of public agencies) , you can work to deny or diminish services to people with such severe and complex needs within the DD population. I could never envision closing RHCs because I see the necessity for their existence. If you actually went, toured, met and spoke with residents, family members and guardians, you would see that each RHC is a community as well as the community of choice and safety for many people. I believe you would come away recognizing their critical role in our community.

Trying to take this choice away appears to dismiss their residents as not worthy of being safe. I saw this even before our son was in need of the services. When he was eleven, I would not have considered institutional placement for him but I would not have cut that option off for those who needed it. I realize that there is a wide variation of needs and just because one person with DD does not need those services, it does not mean that no person with DD might need them.

As our children age and change, different issues arise. As a parent who has lived through it, I can say that a dual diagnosis changes the whole scenario of needs. Care and supervision for safety becomes extremely complex, demanding and person intensive.

The estimate of the incidence dual diagnosis, (dual diagnosis is developmental disability and a mental illness diagnosis) is between 30-50%. (NADD – An association for persons with developmental disabilities and mental health needs www.thenadd.org). Often in speaking and advocating for people with DD one forgets about this extremely extra complex group of people.

Our son is very active in community events both inside and outside of the RHC. He is a well known participant in the Seattle Parks and Recreation Specialized Program – both the Saturday Activities and Day Camp. He participates in neighborhood celebrations and concerts, attends church every week and many other activities.


I invite you to join me on an RHC tour, to meet him and learn why an RHC is the home of choice for him and others with such complex needs that they can only be managed in an RHC community.

Please, do contact me – I’d love to have a discussion, take people on tours of Fircrest or Frances Haddon Morgan Center, introduce you to my son and talk about how we can come together to truly advocate for ALL people with disabilities.

People may contact me personally at cherylfelak@msn.com

OLDER IMACS FOR ASSISTIVE TECHNOLOGY

501-c3 COMPUTER DONATIONS NEEDED
(IRS deductible / Friends of Fircrest )

Hi Saskia
I am making a request on behalf of the Fircrest Assistive Technology Clinic for donations of computers for people who live at Fircrest School in Shoreline Washington. Almost all homes have at least one Mac for residents to use. Some of these are extremely old and failing. At this time we are requesting help in finding ‘newer’ old Macs.

Specifically we need iMacs with "OS-9" operating system, built in speakers and CD drive that are operational, & a working USB port + keyboard and mouse.

The reason we are requesting older Macs is because the software we have is too old to operate on OS-10 operating system. To replace the special needs software, which is very old would be very expensive & funding is not available.

Thank you for all your efforts for the people who live at Fircrest.

Kathleen(Kathy) M. Smith MSPA
Speech Language Pathologist
Fircrest School
(206) 361-3163
email: smithk@dshs.wa.gov

Note from Saskia: Assistive Technology uses Macs to help residents with a range of needs. They are necessary as well as a special godsend to some whose lack of abilities is extreme. Your donation would make an enormous contribution to their wellbeing.

If you have a tour of Fircrest planned, I recommend that you ask in advance to see the PEP (personal empowerment programs) as part of your tour.

(IRS tax deductible: 501-c3 donations/ Friends of Fircrest )

MOVIN' FOR MONEY

by
Peanut Butter & Jelly

As I watched his shoulders smoothly roll back and forth, his arms slicing through the water, his strong legs kicking behind with hardly a splash, I remembered that my son was always more graceful in water than he was on land. As a toddler he crashed his way through life with more than his fair share of thumps and bumps; a "toe runner" the neurologist called him, and then something about it being a developmental indicator that had something to do with delays, and then there was this low muscle tone thing, which was really hard to understand because this was the most active two-year-old on the planet. A whirling dirvish, my grandmother called him. He would buzz around a room with such high level energy that his fine blond hair would be sweat-soaked and stuck to his head. Then we discovered the pool. There was something about the water resistance and being horizontal that set his "body map" right. Maybe it was like a return to the uterus, you think? Whatever it was and is, if you watch him walk, you can tell there is something "different" about him. But when you see him swim, you see he is all right with the world.

So I watched him, and the people he has grown up with for the last twenty five years, as they swam laps at the Meadowbrook Pool to raise money for Seattle Parks Specialized Recreation Programs. Most of these people, like my son, are completely at home in the water, and in their own skin, their own joy, as they experience the freedom from gravity and the joy of play on purpose. There is no competition here. Every participant has raised money by pledging to swim a certain number of laps and getting friends and family members to sponsor them. I am envious that nobody cares what they look like in their bathing suit, nobody has body hang-ups, nobody cares how fast they swam a lap or if they rested between laps or even in the middle of a lap. It so isn't the point. And it so makes me wonder if, in our competitive, hurried, false-beauty conscious world we do get the point.

The participants who didn't swim walked laps around the track, or rolled around it in their wheelchairs. The high school marching band gave a great performance, and the laid-back atmosphere of the day was a reminder that we might all slow down once in awhile and lap up life for all the right reasons.

peanut butter & jelly

It is not too late to contact Seattle City Council Members about retention of the Specialized Programs in the Seattle Parks Department budget. They won't know how important the programs are unless we tell them.
Saskia

Seattle Parks and Recreation Specialized Programs

I attended the Seattle City Council Finance and Budget Committee on May 4, 2010. I, too, as the previous woman who posted about this meeting, was amazed at the number of people in attendance. I believe there were well over 600 people crammed into the cafeteria and there was an "overflow" room next door.

I attended this meeting (my first ever) to support our Seattle Parks and Recreation Specialized Programs. This program has been instrumental in our son's life. I am always amazed at the interesting and fun activities that they undertake. Our son participates in the Saturday Activity program and the Summer Day Camps at Woodland Park. These two programs are just a snippet of the many offerings to choose from. There are many exciting programs for both children and adults.

I can not say enough wonderful comments about this program - there is nothing else like it. They have never said "we can't take him." No other program is available that will work with the various issues that our son deals with. These programs are for children aged 4-21. It took us until Thomas was about 9 for me to feel comfortable sending him - not because of them but because of me. I had nothing to fear - he has attended almost every Saturday activity and day camp now for 6 years.

Even now with Thomas living at Frances Haddon Morgan Center, we pick him up on Fridays and he attends the Saturday program. He grabs the pamphlet the day it comes in the mail and memorizes the whole schedule. He has had so many exciting trips that he would never have been able to go on if it was not for these wonderful people! This is just a sampling of the trips that they have taken: Oaktree Movie Theater to see a movie, Outback Kangaroo Farm, M-Bar-C Ranch on Whidbey Island, Storybook Theatre, Sky High Sports, Boehmes Chocolate Tour and XXX Rootbeer, Point Defiance Zoo and Safeco Field.

Not only are these great activities but Thomas also has real friends that he has met through the parks department. It is truly a community event for our family members! In addition to the benefits for Thomas, our family has also benefited - it has been wonderful respite time for us.

This Sunday, May 16, is the annual "Moving for Money" fundraiser for the Specialized Programs. Please consider supporting this program to enable our family members to continue being involved these precious activities. Also, please invite your children's friends to also participate - you won't regret it!

I have attached a link to the Spring Catalog of activities for Adults and Children. There is also link to the video of the Seattle City Council Budget and Finance meeting. It lasted several hours but at about time 21:00 and about 51:00, you can see member of our community speaking in support of the Specialized Programs.

Thank You

www.seattlechannel.org/videos/video.asp?ID=2101025

http://www.seattle.gov/parks/specialpops/Spring10.pdf