It’s a beautiful day in the neighborhood!

 

Therapy Garden at Fircrest

 

 

Today was a wonderful day in the neighborhood.  I have been volunteering frequently in the community gardens at my son’s supported community.  As I spend more and more time on campus I see more and more how strong and supportive the community is.

Today I had 5 residents from 3 different houses helping fill the watering cans from the rain barrels that have been collecting rain water, planting peas, parsley, carrots, and watering the strawberry plants that we planted last week in the new strawberry field.  In addition to this we all sampled several varieties of the tasty greens that we are growing – the favorite is the Ruby Streaks Mustard Greens and the Tatsoi – an Asian green that is crisp and mild.

We then cleaned spruced up some gardens which have a huge dill plant and then weeded around the raspberry plants which are rejuvenating.  Next on the list was to water the blueberry grove which also has lots of onions and garlic growing around the perimeter.  It’s great that some of the residents have really taken on ownership of these gardens and the watering!

While I was there today I know that residents from two households were going to go to movies – different movies at different theaters and some others were going to go out for dinner.  Many were out walking and enjoying the weather and it always amazes me that everyone knows everyone else and they watch out for each other.

I also witnessed a support team call  - in this community there is always the opportunity at any moment for a crisis to erupt given the high intensity and support needs of most of the residents here.  When a support team call goes out there is extra staff that respond from various houses to the house in need to add extra support to manage whatever crisis has or is occurring.   When there is this type of support in a community it alleviates the need to call 911 for police to respond because the staff are familiar with the residents and are trained to manage the types of behaviors which typically cause a crisis.

It is shameful that many people, included those who call themselves advocates for people with developmental disabilities, push to close these supportive communities.  One reason they do this is because they are clueless as to the benefits of a supportive community for those who need this level of care.  They call these communities ”institutions” because they have not visited recently and have a pre-conceived ideas in their head that if these residents were dispersed, away from their friends and supports, they would be much better off!  They use incomplete information to say that the supportive communities are too expensive.

It’s such a shame that those who push to close these supportive communities refuse to visit and refuse to look at complete and accurate data regarding the cost, supports and services – comprehensive and cost effective and SAFE!

I do know that I enjoy spending time at my son’s community.  It truly is a “neighborhood” where everyone knows your name!

 

 

 

 

 

 

 

 

 

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!

 

Entitlement?

We hear over and over that the Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID) is an entitlement – but what does this mean in real life?

One would think that if something is an entitlement that it would be there for you when you needed those services   Not so with the ICF/ID and in the state of Washington, the ICF/ID is not available to you if you are 21 or under.

Recently I had a conversation with an executive director of an adult family home which is licensed for adults with developmental disabilities.  In talking about the experience that our family  went through in order to have our son admitted to the ICF/ID for lifesaving care,  this person was horrified.

She had heard that the ICF/ID was an entitlement and was very confused by our story.  She had no idea of the struggles and crises that most families and individuals have survived in order to be lucky enough to utilize this “entitlement.”  She then stated that she needed to hear these stories because she had believed that the ICF/ID was an entitlement not realizing that it is really far from that in real life stories.

Listen to the stories of families who are the survivors.  Of the many, many families that I have had contact with and of the stories I have heard, not one has had the ICF/ID offered to them as an entitlement.

In fact, after a long meeting with my son’s case-manager and the Children’s manager for the Division of Developmental Disabilities to discuss discharge planning from one of his many prolonged hospitalizations, I overheard the DDD manager say “Don’t offer them anything!” as I left the meeting.

What they did offer was for us to call 911 for his next crisis since the Regional Service Network Administrator had indicated that he would not approve another admission for our son since “he was not improving with treatment.” Doesn’t that mean that he needs more help and maybe ought to be able to take advantage of his “entitlement?” DDD didn’t think so.

Obviously with respect to the ICF/ID, the definition of “entitlement” is different and does not mean a guarantee of access to benefits based on established rights. It seems to mean fight until you are almost dead, endure abuse, be jailed, or many other horrible scenarios before you may be “entitled” to access appropriate care in the ICF/ID.

People need to know the stories of our survivors.  Please share yours.

 

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

 

Pilot Program Promising

Comprehensive, coordinated and cost-effective care – this is not impossible!

Children’s Comprehensive Care Clinic is a pilot program in Texas which is showing promise.  In Washington, we could expand on this by utilizing the campus communities at the Residential Habilitation Centers to become “Comprehensive Care Clinics” for our citizens with developmental disabilities.  The report, Medical Care Task Force Jan 2002,  outlines a process to establish comprehensive, coordinated and cost-effective care.

When looking at cost of care for residents in the supportive communities or dispersed communities, some of the major costs that are not included in the dispersed community costs are medical, psychological, and therapeutic costs.  Removing these costs from the cost analysis does not mean they are free – it means they are not available or accessible or not provided.  Of the many, many studies that have been done this issue of not including medical costs is a problem.  What is interesting though is that the studies that have been conducted in the UK are more accurate – different funding and different agendas.  The UK studies have consistently found that dispersed community services are more expensive than institutional services.

Another interesting issue is “quality of care” and “quality of life”.  The Arc and other DD Advocates do not look at issues that are outside the personal outcome measures, such as choice and community involvement.  They are missing a huge part of “quality of care” issues by their narrow focus and do not realize that “quality of care” influences “quality of life”.

Quality of care (health and safety outcomes) can be measured objectively where as “quality of life” is more subjective.  We meed to include measurements of quality of care into our assessments and cost analysis.  Below are some examples of areas needing evaluation.

a..  access to comprehensive health care services (primary, psychiatric and dental care as well as ancillary services, including care coordination)
b.  rates and status of abuse/neglect reports and investigations (including victimization in the community)
c.  mortality review
d.  access and utilization of behavioral services and
e.  similar direct measures.

When people who require complex care from a variety of professional services receive all their care in a “medical home” model, such as the ICF/ID, dispersing these people  will make access to healthcare, therapies, nursing, recreation and more unavailable. It is well documented that people with ID have higher rates of chronic medical and psychiatric illness than the general population.   It is also well documented that people with ID have an increased incidence of medical illnesses and have need for comprehensive, coordinated medical services. (Kaye McGivney, 2008)  For the best care it is critical to maintain the same providers over time and to avoid disruption of services. (Kaye McGivney, 2008) No longer will services be accessible or able to be shared.    This means that either the cost of care will greatly increase or that the person will not receive care.

Research also shows that those with DD, when admitted to the hospital, stay longer than those without a developmental disability.  People with DD are also less likely to be discharged to their pre-hospitalization living arrangement due to the fact that the needed supports were not accessible.  This fact highlights the importance of having specialized residential centers (ICF/IDs) to help alleviate the cost of care, crisis care and hospitalizations.  Having such centers increases stability is cost effective and provides stability to the citizens.  (Haier Saied, 2003)

Developmental Disabilities are not only experienced by the person but by the family.  We need to look at not only individual quality of life but the families’ experience and quality of life too. (Colvin, 2006) It is critical to the health and safety of our most vulnerable citizens and  a responsibility of our communities and government to realize that we need supportive communities such as the ICF/ID to best care for some of our citizens in the most cost effective, stable, reliable and safe method.

To do otherwise, is negligent.

Works Cited

Colvin, A. D. (2006). Variables Influencing Family Members’ Decisions Regarding Continued Placement of Family Members with Mental Disabilties in One State Operated Institution.

Haider Saeed, H. O.-J. (2003). Length of Stay for Psychiatric Inpatient Services: A Comparison of Admissions of People with and without Developmental Disabilities. The Journal of Behavioral Health Services & Research, 30(4), 406-417.

Kaye McGinty, R. W. (2008). Patient and Family Advocacy: Working with Individuals with Comorbid Mental Illness and Developmental Disabilities and their Families. Psychiatric Quarterly, 193-203.

 

Public funds used to discriminate – The Arc of King County

There has been a long-standing issue with regards to advocacy by The Arc of King County.  The Arc of King County has a contract with King County Department of Community and Human Services, Developmental Disabilities Division, which provides thousands of public dollars, both county and Washington State funds, to The Arc of King County to fulfill advocacy, outreach and support to people with developmental disabilities and their families.

The Arc of King County discriminates against people and their families who may need the full continuum of care support needs provided in our state operated residential habilitation centers.  These supportive communities provide an intense level of support in the most cost effective and safe way to some of our states most vulnerable citizens.  The Arc of King County does not support any form of congregate care and therefore uses their personal and corporate biases in violating the contract they hold with King County.  In essence, they are using our public funds to mislead and misinform people.

It is perfectly fine for The Arc of King County to not support congregate care but they need to be upfront and honest with that bias and allow others to share information and education regarding these supports.  Censorship is regularly used by The Arc of King County to prevent families from sharing information regarding the needs of people who may desire the community supports at the residential habilitation center.

The Arc of King County denies access to Facebook pages, Websites and public blogs to people who may support a full continuum of care.  This is violates the contract they hold with King County.

Please write to your King County Councilmember informing them of these violations and inappropriate use of our county funds.

The Arc of King County Contract with King County 2012

The Arc and King County Contract with highlighted boxes

The Arc of King County and Social Media

king county funds to The Arc of King County

 

 

 

Self Advocacy and The Arc of King County

“You do not have my permission to use my picture or any image from our publications, website, blogs or Facebook.

Sylvia Fuerstenburg (Executive Director, The Arc of King County)

given the above restrictions put on me by the Executive Director of The Arc of King County, I cannot put a link to her blog on my site.  The name of the blog is Sylvia’s Blog and there is an entry on March 4, 2013 regarding self-advocacy to which I have attempted to post a comment.  My comment is below but may not be posted to Sylvia’s Blog as it may stay under “awaiting moderation” so that it will not be visible to others who may read the blog.

Cheryl Felak on March 5, 2013 at 7:48 pm said:  This post was not approved and was removed from the website.  I have therefore attempted to post again  - see note below:

Your comment is awaiting moderation.

I fully support the work of self-advocates but I also have some serious questions regarding self advocacy for those who are not able to be their own advocate. I believe The Arc assumes that everyone can be their own self advocate if they have the training to do so – as evidenced by the quote ” Becoming a self-advocate simply means protecting one’s own self-interests — demanding re­spect, reaching out for the services and supports needed to fully participate, and simply making others aware of what it means to be a person with I/DD. When you empower yourself in this way, you can then empower others to join in the cause with you.’

My reality and the reality of many who I know and work with, being their own advocate is something that they cannot even comprehend. This is why they need others to advocate for them and why they need guardians to help protect them. Are you saying then that the people who advocate for those who are unable to be their own advocates are not needed? How does The Arc value the concerns and work of these advocates who advocate on behalf of our most vulnerable who are unable to be their own advocates?

When a person has no concept of personal safety, how to stay safe, what they may need to manage their own personal care, is unable to figure out out to get things they may need for food, shelter, personal safety, and without someone there to help them every day to maintain their health and safety, how does The Arc envision teaching these people to be their own advocate? What if these people cannot voice their concerns? What if these people do not know what they need?

I do not see these issues addressed in connection with self-advocacy and I would really appreciate knowing how The Arc and self-advocacy groups address these issues and how they view the advocates who work on these people’s behalf.

 

I fully support the work of self-advocates but I also have some serious questions regarding self advocacy for those who are not able to be their own advocate. I believe The Arc assumes that everyone can be their own self advocate if they have the training to do so – as evidenced by the quote ” Becoming a self-advocate simply means protecting one’s own self-interests — demanding re¬spect, reaching out for the services and supports needed to fully participate, and simply making others aware of what it means to be a person with I/DD. When you empower yourself in this way, you can then empower others to join in the cause with you.’
My reality and the reality of many whom I know and work with, being their own advocate is something that they cannot even comprehend. This is why they need others to advocate for them and why they need guardians to help protect them. Are you saying then that the people who advocate for those who are unable to be their own advocates are not needed? How does The Arc value the concerns and work of these advocates who advocate on behalf of our most vulnerable who are unable to be their own advocates?
When a person has no concept of personal safety, how to stay safe, what they may need to manage their own personal care, is unable to figure out how to get things they may need for food, shelter, personal safety, and without someone there to help them every day to maintain their health and safety, how does The Arc envision teaching these people to be their own advocate? What if these people cannot voice their concerns? What if these people do not know what they need?
I do not see these issues addressed in connection with self-advocacy and I would really appreciate knowing how The Arc and self-advocacy groups address these issues and how they view the advocates who work on these people’s behalf.
I’m also very curious how The Arc addresses the issues of the incompetent person as defined in Washington State Law and guardianship. By definition of one’s disability and functional abilities some people are not able to make safe choices and by court order are unable to make those choices. How does The Arc address these people with regards to being a self-advocate?
The court realizes that some people are unable to make safe decisions and the court has taken steps to ensure there is a person who will make those decisions on behalf of those who are, by definition of their very disability, legally incompetent. This makes them dependent on their parents/guardians to represent them. Why does The Arc seemingly discriminate against court appointed legal guardians to advocate on behalf of their ward?