King 5 News “Investigation” is misleading

Clarification on some of the information that Susannah Frame has reported in her “investigation” is needed.  My goal with providing clarification and resources is to encourage a discussion based on facts.

The nature of  an intellectual disability means people have cognitive impairments which may mean that other people will need to help them to make decisions, or make decision on their behalf.  Their quality of life will depend on the availability of skilled supports.  Some people will need more than others and this is why we need to have a full continuum of care to manage the wide variety of needs of this heterogeneous population. Personally, it does not matter to me what community a person chooses but it does matter that the person is given the truth about the options and that they have a choice.

Again, the story is not “community vs institution” but how do we best serve our most vulnerable people.  Continuing the either/or argument only hurts everyone.  Let’s look at the facts – not just wishful thinking – and work together to improve the quality of life for people all across the board.

  1.  Susanna Frame stated ” In all, 16 states have closed all of their large facilities for the developmentally disabled, including Oregon, Hawaii, Alaska, New Mexico and Oklahoma. These states are serving this entire population in community settings” http://www.king5.com/story/news/local/investigations/2015/11/03/washington-state-developmentally-disabled-residential-habilitation-center/75065984/
  2. In actuality, they may have closed their “state operated” intermediate care facilities (ICF)  but there are private ICFs in almost every state and if the state does not have a private ICF to use for a resident, the state will send that resident to another state for that care.
    1. Reviewing the reports to the Centers for Medicaid and Medicare  – form 64 (CMS -64 – the statement of expenditures for which states are entitled to Federal Reimbursement) there are only 2 states which did not receive reimbursement for ICF costs. (Oregon and Vermont did not have any costs, Arizona is excluded due to their non-reporting on this CMS report)
    2. If what Susannah Frames states is correct, why are these states receiving Federal funds for something they have closed?  That needs to be investigated.

The chart below has data retrieved from the CMS 64 Quarterly report for 2012.  As one can see, Washington is not “decades” behind when the data and resources are revealed.

ICF costs for 2012

References

“CMS – 64 Quarterly Expense Report.” 2012. <https://www.cms.gov/Research-Statistics-Data-and-Systems/Computer-Data-and-Systems/MedicaidBudgetExpendSystem/CMS-64-Quarterly-Expense-Report.html&gt;.

“Community Living and Participation: Embracing the Complexity.” Intellectual and Developmental Disabilities 51.5 (2013): 423-427.

Larson, S.A., Hallas-Muchow, L., Aiken, F., Hewitt, A., Pettingell, S., Anderson, L.L., Moseley, C., Sowers. M., Fay, M.L., Smith, D., & Kardell, Y. In-Home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and trends through 2012. Minneapolis: Univer: University of Minnesota, Research and Training Center on Community Living. Institute on Community Integration, 2014.

United States Census Bureau – Population Estimates – National Totals 2014. 2014. <https://www.census.gov/popest/data/national/totals/2014/index.html&gt;.

Malika is lost!

Malika

 

Today when I picked up my son at his house to take him to the doctor, he was very excited to tell me about things he had learned.  Unfortunately, he doesn’t understand what it means or how scary the situation is – to him it’s exciting news because someone he knows was on TV.

Malika lived in my son’s supportive community – “Malika moved”  “Malika on TV”  “Malika lost”  was the news that he told me.

Malika has now been found:

A 17-year-old mentally disabled girl who ran away from a Bonney Lake-area group home Sunday was found safe this morning, according to the Pierce County Sheriff’s Office.

Auburn police found Maliika Andrus at a Starbucks coffee shop after a witness reported seeing her. She was taken to a local hospital for evaluation and will be returned to the group home later today.

Staff last saw the teen early Sunday morning at the facility in the 18400 block of South Tapps Drive East. Deputies believe she tampered with the alarm on the window of her room so she could escape

Washington State passed a harmful law in 2011 which prohibits “youth” 21 and under from admission to the supportive community of our state’s Residential Habilitation Centers (RHCs).  They may be allowed short term admission in crisis situations if no other alternatives are available.  The only alternative is the new 3-bed crisis stabilization unit – that is hardly sufficient to safely care for our youth.   Malika was most likely admitted on a short term stay and that had expired.  Our state had to evict her from the safe community to a group home.  Alarms are not nearly as safe as alert human eyes and presence.
This law puts all our youth with disabilities and their families at risk.  We need to overturn this law to help prevent harm to our loved ones.

 

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.

 

 

 

Tierra Village – Job Opening!

Welcome to Tierra

 

We are a small land based community in Leavenworth Washington with similar core values to Camphill but in a multi-denomination setting. If you know of a co-worker/care provider who is great AND might be looking for work, can you pass this job announcement along to them.  The design of our house seeks to balance the intensity of the job with access to beautiful and private living space. 

 

We have a wonderful and small community at Tierra that works hard to keep life a learning experience. 

 

TIERRA VILLAGE JOB ANNOUNCEMENT 

 

 Tierra Village, in Leavenworth, Washington, is seeking a dynamic and experienced care partner to work in spectacular natural setting. Responsibilities include supporting five adults with developmental disabilities access healthy options/ opportunities/connections. Successful applicant will live onsite in a separate spacious and hand-crafted apartment with private access and outdoor space. Application process closes August 5, 2013. Start Date October 15, 2013. Applications received will be reviewed on a rolling basis until position is filled. Please apply on-line at http://www.tierravillage.org/get-involved/job-opportunities/resident-managment-position 

Salary meets the industry standard. Benefits include housing, food when working, medical and vacation time.

 

Please see attached photos.

                     Thank you for passing this along to friends,

 

Shanda Holm

 

Tierra Village, Executive Director

12000 Sunitsch Canyon Road

Leavenworth, WA 98826

Ph.          509.548.6880 ext.2

   www.Tierravillage.org

 

We toured this community earlier this spring and were just in awe of what they have already accomplished.  Coyote House was nearing completion and you could see the love and attention that went into every detail of building this home for the needs of future residents.  The apartment for the resident manager was beautiful too and a wonderful perk to this job!

Please pass this on to anyone you know who may be interested.  This is truly a dream community and one which has developed from the love and devotion of the director and board.  I’m just sorry that this is not closer to my home so that I could work here – it would be a dream job for me!

 

Art Drawings of Coyote House Farm and field Welcome to Tierra View from the Ridge

Fact or Fiction Part 2

cost center

“Average” Daily Rates in Washington State for residents with Developmental

Disabilities who live in 4 types of Supportive Residential Care

Regarding the cost of care, it is clear that the comprehensive cost of the care of those with the highest support needs who choose the RHC is the most cost effective care.  As revealed in the report “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” (2011) residents in RHCs had significantly higher support needs than community residents.  The RHC residents were also significantly more likely to meet both extensive behavior and extensive medical support needs than residents in community residential programs.  “Our current findings suggest very clear difference in medical support needs, with those in RHCs being more likely to have high medical support needs than those in community residential programs.” (Barbara A. Lucenko, PhD and Lijann He, PhD, 2011)

 

This report also examined the DDD Acuity Scales and found that the residents in the RHCs also  had significantly higher support needs in interpersonal support, protective supervision and Activities of Daily Living (personal care, dressing, bathing, eating) in addition to medical and behavioral support needs. 

 

 

Looking at the daily cost of care in each cost center, it is also clear that there is much cost shifting in some areas which make it appear that the cost of care is less expensive.  This is the information that is often not shared when comparing costs.  It is also critical to look at the support needs of the residents in each setting, realizing that those in the RHC have significantly higher support needs and inherently higher costs related to the higher support need.

 

One other area that is misrepresented is that the “community” ICF/IDs offer the very same services as the state run supported communities of the RHCs.  It is clear by auditing their costs that this is not the case.  Knowing the high support need of the average RHC resident, it is very clear that this average RHC resident could not be safely and cost-effectively cared for in the “Community” ICF/ID since the comprehensive services are only available in the RHC. 

Please see this link below for a description of the cost centers and more information on the data 

 Average Daily Cost of Care

Bibliography

Barbara A. Lucenko, PhD and Lijann He, PhD. (2011, February). Assessment Findings for Person with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings. Retrieved from http://www.dshs.wa.gov/pdf/ms/rda/research/5/36.pdf

In Washington State the term Residential Habilitation Center (RHC) is inclusive of the ICF/ID and the specialized Nursing Facility.  The costs in these reports are only for the ICF/ID part of the RHC.

 

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