Fantasy of Inclusion

Take a moment to read this blog posting “Three Strikes… and He’s Out?

Wow – this is reality for many of our family and community members – this is why we become isolated.  Inclusion for us is a fantasy.

A recent comment made to me by a King County District Court Judge regarding taking my son to a self-advocacy meeting and a Seattle Commission for People with Disabilities meeting ;

“I think you took your son  there just to bother him”   (referring to the Autistic Activist who told me that guardians are all self-serving and every person is able to speak for themselves)

Thank you, Judge, for your understanding –  I do not take my son places to bother others – is that how you view INCLUSION, Judge?

Yes, I’m sure my son’s behavior does bother people and he is not able to be appropriate in many settings of inclusion.  Waiting in line, being patient, being quiet, sitting down, keeping hands to himself, are all very difficult things which take constant support to try to have a resemblance of “appropriate” behaviour.   It takes alot of energy to provide this constant support – one of the reasons that caregivers become isolated when ensuring people with disabilities are included.  We don’t want to bother others and it’s not fun for us to try to manage our son’s behaviors in places that are difficult for him – it’s always a balancing act with a needed escape route.

So, if you see us out in our community – we are not there to bother  or frighten you – we are there to try to give our son some meaningful experiences in life.

 

Shame on Frame – King 5 “Investigative” report

Susannah Frame is doing a great disservice to our community. Her total lack of appreciation for the diversity of our population of citizens with intellectual and developmental disabilities is more than problematic.   Without an understanding of this diversity one cannot even begin to understand the complexities involved in the care of our community members.  Below are some bullet points that need clarification from Ms. Frame:

  •  mentioned several times about biases in the “scientific studies” but fails to mention what those biases are.
  • refers to cost of care being less expensive in a community setting – but she has not explained what “cost of care” is or how it is measured.
  •  has not shown any indication that the cost of care is higher for those with higher support needs.
  • refers to the families who have had their loved ones in the RHCs for 20-30 years and are afraid – unaware that there are many young people who live in these therapeutic communities and many more who were denied this care.
  •  has not offered any solutions or real alternatives or how those alternatives could be achieved.
  •  seems unaware of the crisis in our community care system with so little oversight that many fear for their health, safety and lives in these community settings.
  •  has not addressed the issue of access to care in the community such as medical care and transportation.
  •  has not spoken with any of the agency service providers in the community about their inability to staff and appropriately care for an influx of people with very high support needs.
  •  has not addressed what a person’s community is and personal choice in making that decision.

If one is going to talk about de-institutionalization without addressing safe and appropriate supports in the community, this type of advocacy endorses neglect and risk for our most vulnerable citizens. The environment that is the Least Restrictive for that Person is the environment which allows that person to interact with and be part of the community to their fullest potential. As stated in the 1999 US Supreme Court Decision of Olmstead, for some that may be the institution.

The issues above need to be addressed and discussed in any conversation dealing with care of our loved ones. The answer is not arguing  “institution vs community” – the answer is to look at  the diversity of the population and understand their needed supports and then how to fund and maintain those supports.

“Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.”  John Adams

Cost of Care

Yes, it is absolutely correct that DSHS costs for care in the RHC is greater than DSHS costs for care in a community setting. Looking only through the eyes of DSHS it would make sense to close the RHCs to save DSHS funds – but looking at the big picture of how things work that is exactly the opposite of what one should do if cost was a factor. .

Cost of care is one issue discussed  – but not what “cost of care” means for each setting nor the support needs of the residents in each setting.  The graph below is a good example of missing costs – but necessary costs for care.  Looking at the cost breakdowns for areas of care, it is clear the RHC provides a much more comprehensive package of care than the community settings.   The greatest cost of care in community settings is the personal care cost and for people with higher support needs, that personal care cost is extremely high as evidenced by the data from DDA.

RHC and Community Cost

All of these are included in the RHC Cost

Where are they in Community costs?

Other Costs

Resources:

Developmental Disabilities Administration. (2012). Cost of Community Clients with High Support Needs.

(2011). RHC Cost Details and Federal Reimbursement – CMS.

Community Cost of Care Reports, Public Disclosure Information Revealed. (n.d.). Retrieved from http://www.becausewecare1.com:https://becausewecare1.com/community-cost-of-care-reports-public-disclosure-information-revealed/

Clintsman, D. L. (2011). Assistant Director, Department of Social and Health Services. 30 Community DDD Residents – highest costing to DDD.

Atkinson, M. (2011). DSHS: Developmental Disabilities Services Overview. Office of Program Research and Senate Committee Services, Joint Legislative Task Force. Retrieved fromhttp://www.leg.wa.gov/JointCommittees/DDSSTF/Documents/Oct2011/DevDisabOverview.pdf

Barbara A. Lucenko, P. a. (2011). Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings. Department of Social and Health Services. Retrieved fromhttp://www.dshs.wa.gov/pdf/ms/rda/research/5/36.pd

Support Intensity Scale. (n.d.). Retrieved from American Association on Intellectual and Developmental Disabilities:http://www.siswebsite.org/cs/SISOnline

Division of Developmental Disabilities: Intake and Determination of Developmental Disabilities. (n.d.). Retrieved from Washington State Legislature: http://apps.leg.wa.gov/WAC/default.aspx?cite=388-823&full=true

(Data taken from Certified Residential Program Costs of Care Reports for 2010. The agencies from which data was retrieved:

Aacres WA, LLC – Tacoma Aacres WA, LLC Abbott House –  Alpha Supported Living – Ambitions of Washington – Region 4 Ambitions of Washington – Region 5-  The Arc of King County – The Arc of Spokane –  Bethesda Lutheran Communities Camelot –  Centerpoint Services –  Community Alternatives for People with Autism –  Community Homes –  Community Integrated Services –  Community Living – Bellevue –  Community Living – Kent/Auburn –  Community Living – Kent Intensive Community Living – Sunnyside –  Community Living – Yakima –  Destiny House –  Educational Programs in Home Living –  Friends of Families –  Friendship House –  Group Action for Peninsula People –  Harbor Alternative Living Assoc. – Inglewood Residential Services –  Integrated Living Services –  Kitsap Residences –  Kitsap Tenant Support Services –  Life Skills Center –  Maksu, Inc –  Premier Care Services –  Provail  – Puget Sound Regional Services –  ResCare –  Shamrock Living Services –  Shared Journeys –  SL Start – Grandview –  SL Start – Seattle –  SL Start – Spokane –  Stand Together Total Living Concepts (2010)

“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

iphone august 2 022

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

Thomas clapping for All Stars Thomas at All Star Party

Scattered, dispersed housing = Community?

A letter from the National Council on Disability (NCD) was published urging the US Housing and Urban Development (HUD) to swiftly comply with the US Supreme Court Decision of Olmstead.  This is great – except the interpretation of Olmstead is incorrect and the NCD assumes that independent choice is the apparent optimal  goal for people with intellectual disabilities (ID).

I cannot disagree more with the Federally funded National Council on Disability, which states they represent and advocate for our loved ones. My response letter is available  here.  (May 21 letter to HUD)  Community is not a place but relationships.  NCD does not consider relationships and what those relationships mean to many in supportive communities.

We need to define choice and what that means to various people.  Those with severe intellectual disabilities with or without co-occurring psychiatric disorders are by the very definition of their condition, not able to make informed choices.  If independent choice is the apparent goal, would an independent choice of someone with severe ID and psychiatric disorder by wise and safe?  I would tend to think not.

When thinking about choice and housing it is critical to understand what type of choice is desirable – independent or supported.  One should not presume that independent choice is always the most desirable outcome.  “A well-supported choice leading to selection of a wise alternative may be preferable to a more independent but ill-informed choice that results in problems.” (R.J. Stancliffe, 2011)

With this distinction about the definition of choice and what may be safe for each individual, we then can examine Olmstead and the arguments of many regarding community housing for those with ID.

The other very concerning issue other than that of “choice” is what about the caregiver.  Does the NCD not understand that many of these people who they so want to make independent choices often need 24 hour live in and AWAKE care?  If all these people choose to have their own house, who will be there to care for them?  Does the NCD not realize that we are already in a crisis trying to find qualified caregivers for those who may live in supported communities or group homes – how will we be able to safely staff isolated and dispersed homes?

Scattered and dispersed housing does not a community make!

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!

 

 

 

 

 

 

 

 

 

NCD – Deinstitutionalization Delusions

Dear National Council on Disability,

As a healthcare professional and advocate for our most vulnerable citizens, I ask that the National Council on Disability rethink your position regarding deinstitutionalization.

The council is advocating for negligent care by pushing forward with deinstitutionalization.  Not only is this removing choice from these citizens (as guaranteed under the 1999 US Supreme Court Decision Olmstead) but also acting in violation of the US DD Act.

Supportive communities offer comprehensive care for our citizens with the highest support needs and most complex care.  These communities (which unenlightened or inimical people call institutions – I assume because they are unfamiliar with these communities or people who have their homes in these communities)  are homes to many of our loved ones.  Living in a community, sharing services and supports, is a very cost effective method to care for those who have a high cost of care.

Moving these people to dispersed homes, isolating them from family, friends, caregivers and healthcare providers in the name of “deinstitutionalization” makes a mockery of advocacy.  It is the exact opposite of what an advocate should do.

These dispersed homes often have unstable, inadequate staffing ratios and staff who are not trained well.  There is little coordination of care leaving the vulnerable person at higher risk for crisis care.  When care is finally given, generally these people have more advanced problems which require longer hospitalizations than if they had been managed with coordinated care which was accessible.  Promoting this type of “care” is promoting negligence.

When a person is totally dependent on another person (and often a paid provider) to provide all care a

nd assist in all activities, what happens when there is no provider who shows up to work? When an unfamiliar, untrained provider “fills in”? When the provider does not speak your language? What happens if a person wants to go outside or on a walk but there is not enough staff to go on an outing and also stay home to care for a housemate?  People become isolated and imprisoned.What happens is people do not see them anymore.  When our vulnerable citizens are not seen they are forgotten, the risk of abuse greatly increases.  When there is no one watching, no oversight, no one even knows they are there, people’s lives are destroyed.  This is what happens.

Is the deinstitutionalization movement aimed destroying these people’s lives one by one, hoping no one will notice?  If people who lived in a supportive community were dispersed, we wouldn’t have to see them or deal with them.  Is that what this is about?  It appears that way to me.

Supportive communities provide safe environments which are sustainable, employ a wide variety of profess

ionals who are specially trained and must meet annual standards of care.  There is oversight which is monitored and there are clear standards which must be met.  Why would one deny a person the right to safe, appropriate care?

Assuming dispersed homes are a better environment for many of these people is a false assumption

.  Take a tour of not only supportive communities but also dispersed homes, learn about the caregiving staff, learn about access and availability of healthcare, dental care, therapies, recreational and work opportunities before making a decision about what you think would be best for someone you do not know.  Listen to the people who know, love and care for these citizens.  They are the experts .  The experts are saying that we need supportive communities to best care for some of our citizens who are the most vulnerable.  Denying them this choice is not only inhumane but against our laws.

I know what I’m talking about.  My 18 year old son has thrived since being able to move to a supportive community at age 15.  He had been cycling in and out of the hospital with many complications due to a dual diagnosis of developmental disability and mania/psychosis.  Since moving to his community he has not been hospitalized once.  He has the supports he needs to be stable and he loves his home.

My son was honored as a member of the Shorecrest High School Homecoming Court this past Fall. (S

horeline Public School )   Far from being isolated he is well known in his community being very active in ma

ny recreational programs.  Living in a supportive community has enabled him to contribute, belong and participate in our community at large.

Thank you very much,

Cheryl Felak, RN, BSN

HOMECOMING 1

Because We Care – Beyond Inclusion

Attachment below  is just a “sample” list of actual citations from Licensed Adult Family Homes for p

eople with Developmental Disabilities in Washington State.  This list is FAR from complete and it is shameful the abuses and negligence which our citizens are subjected to.  It is very disturbing to know that this is probably only the tip of the iceberg and that many of these are repeat, uncorrected offenses with little or no punishment.

WA State Licensed Adult Homes for People with DD Citations 2011 adn 2012 Samples

 

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.