Families with younger children and teens – protect their choice!

I am writing as a parent concerned for other families who will loose their choice of community settings.  The definition of community is going to be restricted by an artificial definition specifically for those with intellectual disabilities (ID).  People with ID will not be able to choose where they want to live, will not be able to live in any supportive community, inclusive community, within walking distance to other people with ID with the definition that is being considered.  The “community” for people with ID will be isolated and dispersed housing making it virtually impossible for many to congregate and meet other people.  This is called “inclusion” but I call it “inclusion delusion.”

It is extremely unfortunate that many families are loosing this choice and are not even aware of their loss.  It is being decided for them by those who are misguided with policies regarding the Olmstead decision.  Rather than being allowed to be informed and make their own choices, our government is in the process of destroying communities which are safe, stable and sustainable so these families with younger children will never know what they are being denied.

Today, I met with a mom and her 15 year old son.  She asked me how she can look into having her son live at the supportive community where my son lives.  She said that she had asked the case manager who told her that she would not want or need to look into this community.  Developmental Disability Administration (DDA) does all it can to keep people out, even those who are so desperately asking to  access these needed services.

What was interesting is that this mom knew intuitively that the supportive community would be a much better place for her son than a dispersed home.  She said her son would just be sitting at home all day but with this campus there is so much to do and one can go out and walk and not be stuck inside until the staff was willing or able to take them out.  I told her that we really need to hear from people like her, people who have their children at home but know that they will need more help in the future.  These are the people we need to have write letters and contact our legislators, they are the ones that we need to stand up and speak at The Arc meetings, these are the ones that we need to support so that they will have support and choice in the future.

The more people we have come visit the supportive community, the more support we will have for true choice as outlined in Olmstead.

 

Ravanswold flier – a type of supportive community

Tierra Village

 

LTO Ventures lists “Communities to Know” at this link:

http://ltoventures.org/communities-to-watch/

This will give you a good description of supportive communities which are sprouting up to care for our loved ones.

 

 

 

The Arc National Convention

This year The Arc is having their national convention close to my home and I will be able to attend.  I am hoping to learn much and network with many to help support a continuum of care service model.  I realize I will be in the minority but my hope is to spread the word about supportive communities and the benefits these communities provide to not only the residents but our society as a whole.

Unfortunately, the cost of registration is way beyond my budget and I have only registered for one day and the research luncheon.  This alone is $200.00.  My hope is to have some help from others – every dollar helps – no donation is too small – to bring the registration fee into a more manageable zone.

If you would like to help with my cause to donate to my registration fee, you can go to this link and donate there.  Every donation is so much appreciated!

Donation Page at Go Fund Me for The Arc National Convention in Bellevue, WA

Closing Institutions

Many of our supportive communities are being destroyed.  People are being evicted from their homes and dispersed to isolated housing in the name of “inclusion.”  The reason this is happening is because people and agencies are being misguided with inaccurate information, both with regards to costs and with respect to the 1999 US Supreme Court Decision Olmstead.

It is for this reason that I am providing this information in my attempts to clarify what the costs are and what choice means to those of us who care for our loved ones who have  limited abilities to make their own safe choices.

When looking at costs, direct care costs are the most logical cost to compare since this is a cost that is needed in all types of supportive residential settings.  This is the basic cost and the one that is most often reported for the cost of care in community residential settings.  The costs reported for supportive communities (Intermediate Care Facilitates/Intellectual Disabilities (ICF/ID), Nursing Facility/Intellectual Disability (NF/ID) and Residential Habilitation Centers (RHC) ) are generally very comprehensive costs and by the very definition will be more expensive than the direct care costs reported for community settings.  Below are the lists of services that are included in the comprehensive costs for the supportive communities.

Looking at only direct care costs across many residential settings and support needs – there are two very clear facts that can be seen:

1.  The cost of care increases as the support needs for the person increases – those needing more support have a higher cost for direct care.

2.  The Economies of Scale come into play – in supportive communities, even when the support needs are high, the cost of direct care is lower per person, on average, than in isolated homes.

In Washington State, this became especially evident with the closing of Frances Haddon Morgan Center, one of our state’s RHCs.  In addition to looking at the Economies of Scale in action with the downsizing and closure of one of our RHCS, we were also able to obtain the average daily cost of care for community residents with the highest support needs. The chart below illustrates that as the size of community decreases, the average cost per resident for care increases.

economies of scale

2010 direct care costs

2011 direct care costs

2012 direct care costs

The cost difference between 49 residents and 9 residents for Frances Haddon Morgan Center is astounding.  Moving these residents from their homes proved disastrous for several of these residents, death to one, hospitalizations and crisis to others – all for what was assumed to be a cost saving measure.  This experiment failed on many levels.  It’s time to actually look at the real data, understand what the data represents and move forward.

cost centers 1 cost cetners 2

I worked in a sheltered workshop

For the past 3 years I worked in what was essentially a “sheltered workshop.”

I had worked for this large Medical Center for over 20 years when I developed a disability due to being a long-term caregiver to my son with intense support needs.  I requested an ADA accommodation which was very reasonable and actually would have been beneficial to the unit I had worked on – but the management had changed and this particular manager did not appreciate nurses who questioned anything – so consequently, the ADA accommodation that I requested ( to work 8 hours shifts, any day of the week, between the hours of 7AM and 11PM) was found to be unreasonable.  I essentially lost my job on the unit which I loved.

After being put on unpaid leave against my wishes and filing a grievance, the only job that this huge medical center could offer a skilled, committed nurse with compassion for patient care, was a position in pre-op surgery  – this job is the lowest of the low for nurses – a place where those who can’t do their jobs are sent  –   yet is supposed to be the final safety check for patients prior to going into surgery.  I saw the job just as that and became aware of many errors and issues that needed to be corrected – but rather than being thanked or appreciated for trying to improve issues with patient care and safety, I was continually reprimanded.  One manager told me that “this is like Swiss cheese, some things just slip through the holes”  I couldn’t believe what I was hearing!

This job was in the basement of the hospital – 3 floors below the ground – no windows and smelled musty.  Countless days passed with no breaks and time was wasted trying to get the slow elevator to ground level which meant that the 30 minute lunch break was only 20 minutes or less.  My colleague and I were treated as people without brains – only people who were supposed to do one task over and over again (start IV’s in surgery patients) without thought to what was going on with the patients.  We were to act as robots without brains.  We were to ignore issues that were of concern to patient safety because our job was only to start the IV.  If there was a difficult patient or some issues that caused a delay, we were reprimanded for holding up the “flow” of the department.  What ever went wrong or slowed the process, was blamed on us.

I was called into the manager’s office many times to be reprimanded for looking up things on the computer.  I told the managers that I would look up things I didn’t know, medications I was unfamiliar with, conditions on the patient’s history and physical that I needed to know more about or education on nursing issues.  I was told that I was not allowed to educate myself on company time – that wasn’t part of my job description.

No wonder I began to hate my job and hate going to work.  I had never experienced such job dissatisfaction in my over 25 years of being a nurse.  I was essentially being paid to not think and to not be a nurse.  I felt like I had a master watching every move and if I didn’t stay on task a huge whip would come down on my shoulders and I lived in constant fear of being fired for trying to give quality patient care.

As I was talking to a friend about my new job and how happy I am in it describing my day, my friend said “it’s normal but you were treated like a slave for the past 3 years so what is typical and professional for others seems odd to you coming from your old job.”  It then dawned on me that I had really experienced what many say a sheltered work shop is – working in sub-standard conditions, doing the same task over and over and over with no ability for advancement or progress.  One difference though is that I was paid well for my job – but then money isn’t everything.

I have to say though that “sheltered workshops” are not all like what many believe they are.  They are not assembly line jobs with the person doing the same task hour after hour and day after day with no opportunities to try new things or to experience pride in their work or to earn good wages.  Many operate as supported employment – developing the skills that each individual shows potential in.

I know my experience is very different than that of people who have ID and do not have appropriate or adequate supports or have choice in what they may or may not do or where they may choose to work but it did give a glimpse into the process of pushing people down into holes where they do not fit and not allowing them to learn, grow and contribute and be a productive part of the team.

 

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!

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.