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

Fact or Fiction?

Personally, I do not favor one type of environment over another as long as the person has choice and they and their families understand the issues and the person is safe.  It is for this reason that I fight so hard to help others to understand the real issues and research the data for facts – not fiction or magical thinking  – so people can be aware.

One issue that is extremely disturbing is the groundless “fact” that people believe to be true – that living in the community costs less.   When looking at the whole picture, living in dispersed housing for those with higher support needs costs much, much more than living in a supportive community such as a Residential Habilitation Center (RHC)  or Intermediate Care Facility/Intellectual Disabilities (ICF/ID)

Today I am posting Pie Charts of Costs which were taken from Certified Copies of Cost Reports that various types of agencies submitted to our state (Washington).  We hear that the services in the “Community ICF/IDs” are just the same as those in the RHCs but by looking at these simple graphs one can clearly see this is not the case.

Please take a look – more data will be forthcoming regarding costs, services and cost-shifting.

RHC Cost Breakdown

 

The RHC offers a comprehensive Package to those with high support needs who choose this supportive community setting.

 

Community ICF ID cost Breakdown

 

We are told the “Community” ICF/ID offers the very same services as the RHC – the cost data does not support that statement.

 

Group Home Costs Breakdown

 

Group Homes offer fewer services and are generally for those with less high support needs.

 

Supported Living Cost Breakdown

 

Supported Living Homes offer even fewer services and supports.  

 

 

Sno-Cones at 3:30!

Wow – summer finally started in the Seattle area today.

I was at my son’s supportive community and they decided to pull out the sno-cone maker machine – talk about bees swarming to honey! This treat was much appreciated by all and the campus was buzzing with activity.

This is what true community is about – being able to participate and have fun with your neighbors!

Even with the lure of sno-cones, the residents who garden with me were excited to pick the first of our snap peas – they are like candy to some of us.  The tomatoes and corn were planted, too.  The gardens will be in full swing very soon!

Our blueberry bushes are amazingly abundant with berries – can’t wait until it’s time to pick them.  Look at this photo that was taken last week after a rainfall.  The bush can barely hold itself up due to the weight of the berries!

Blueberries

 

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!

 

 

 

 

 

 

 

 

 

Sylvia’s comments and thoughts shared

Sylvia Fuerstenburg, Executive Director of The Arc of King County, has again written an essay regarding the advocacy of The Arc for people against the right to live in supportive communities.   I just cannot wrap my brain around how an advocacy group, which receives thousands of dollars of public funds each year, is allowed to openly discriminate against a segment of the population which they are PAID to advocate for.  They clearly do not understand the situations of those who have homes in supportive communities and do not seem to realize that moving many of these people from their chosen communities and homes will only increase the crisis to the community as a whole.

Below is my letter to Ms. Fuerstenburg and Mr. Lance Morehouse, the Outreach and Advocacy Coordinator for King County Parent Coalition:  Please send your comments also.  I do not think that my comment will be published given past history of The Arc blocking critical information for families regarding supportive communities. but I keep trying to get through.

Dear Sylvia and Lance,

I would appreciate the opportunity to make a comment regarding your letter in the December Newsletter.  I do hope that my comments will be available for all to read and discuss.

I wholly support the mission of The Arc to advocate for people to live in the community of their choosing.  “The Arc believes that all people, regardless of the severity of their disability, can live successfully in the community with individualized and appropriate supports.”  I think that all advocates believe this – the problem is finding funding and maintaining a stable, qualified support staff as caregivers for those who need supports.

Do you listen to the people in the community talk about the difficulty they have in finding even someone to provide a couple of hours of respite?  Do you read about the very high staffing turnover of caregivers in community homes (up to 45% in some areas).  Do you listen to families of people living in family homes about how many caregivers they interview and hire each year to help with caregiving in the home?   Do you hear the parents who cannot work or who have lost their job because they have used too much “sick” time because they cannot get another caregiver?  Do you hear the families who are bankrupt or struggling financially because they cannot get help caring for their child?  Do you hear the families who use the ER or have to have their child admitted to the hospital for crisis care – the only “respite” those families receive?

It does not appear that The Arc hears these voices – if you did, it would be negligent to increase capacity of this residential population, particularly of those who need high supports, which would then over-tax an already under-funded and under-staffed community residential service system.

I have never heard that one is “too disabled to live in the community” from a person who advocates for a continuum of care, including living in a supportive community.  You’re right, no one is “too disabled” but there are people who do require a team of support people to keep them safe and healthy.  Sure, with unlimited funds, everyone could live in a residential neighborhood – but that is not the reality.  Our funds are limited.

As Lance said in the October 23, 2012 DD Task Force meeting, his son was able to live at home for 17 years with the help of 19 hours a day of licensed nursing care.   I’m very happy that their family had this opportunity but this is not a cost effective system to manage a large number of people who may need this level of nursing and caretaking support.  If all those in the supportive communities chose to live in a neighborhood residential home and required this high level of support to survive, would our state be able to financially handle that?  I know it wouldn’t.  So why then, does The Arc advocate for this type of residential service (which is clearly more expensive than a supportive community) and then say that those in the supportive community are taking more than their share?

It should really be the opposite – our state should be thanking those who choose to share services, and thanking those who choose to live in a supportive community home for many reasons.  These communities have a track record of having a more stable workforce and the fact that many services can be shared among residents is much more cost effective system for those with high support needs.

These supportive communities are far from segregated – in fact, most of the residents who have homes in these communities are out shopping, going to school, participating in parks events, go to church, attend neighborhood and city functions and more.  You just may not be aware of them because they have the support that they need to be out and about – unlike people locked away in their “community residential” home because a caregiver did not show up for work or the staff is untrained in behavior management and therefore unable to take the resident out of the house, or some other reason.

Living in a supportive community allows one more freedom.  Many of our citizens of all ages and types voluntarily choose to live in some sort of supportive community for various reasons.  Why are our citizens with ID/D being denied this right to choose which community is best for them?  Isn’t this discrimination against them due to their disability?  Isn’t the Arc against that type of discrimination?  Apparently not since The Arc advocates, and uses public funds, to do just that – discriminate against our most vulnerable.

It’s time for a change – let people have the choice – true choice – give them the information, allow them to decide what is best for them.

Thank you,

Cheryl Felak, RN, BSN

Photo and link from

December 2012 Newsletter

 http://hosted.verticalresponse.com/437417/c96b185e8e/1461566135/cdb5bffe12/

The Arc o f King County receives publlic funds from King County and Washington State to share information and advocate for individuals with DD

The Arc o f King County receives public funds from King County and Washington State to share information and advocate for individuals with DD