The last of the Institutions – Part 5

Unfortunately, once again, Susannah Frame has mislead people in this “investigation” series on King 5 in Seattle.  There is much to clarify in this recent segment which aired December 8, 2015.

Myth 1

“Only a handful of states operate more institutions for people with developmental disabilities than Washington. And in Washington, more people live in these segregated settings than most of the rest of the country”

Fact of the matter:ICF ID Table 2013

The above table is only the STATE Operated ICF/ID’s

26 states have fewer State operated ICF/ID s for a total of 25 facilities which are home to 11, 294 people (Average per facility – 451 people)

24 state have more State operated ICF/IDs  for a total of  828 facilities which are home to 42,553 people (Average per facility – 51 people) –

Hardly what I would call a handful of state (or facilities for that matter!)

 ICF ID Chart by state 2013

Myth 2

“Since the 1970s when the deinstitutionalization trend started, 16 states have closed all of their institutions that once housed the developmentally disabled, including Oregon, Alaska, and Hawaii. And 21 states, including Idaho, have fewer than 100 residents total living in these types of public facilities”

Nursing Facility and over 16 residents 2013

CMS cost reported by states 2013

The above table is taken from the CMS-64 report.  Again, Susannah Frame is incorrect with her “facts”.  There are only 8 states that have not reported funds for a STATE OPERATED ICF/ID.

It is interesting to note of those states with no costs for a state operated ICF/ID,  6 of those reports costs for private ICF/IDs.  Some of these are quite pricey to the states that have them.

Interesting that only 12 states do not have a large State operated Facility and only 7 states have less than 100 people in these state operated ICF/IDs and Nursing Facilities.

More to come about the private facilities in each state and the funding for both the ICF/IDs and the Home and Community Based Waivers (HCBS).

I believe Ms. Frame and King 5 have some additional investigative work to do.  This is a very sloppy example of research which they are promoting.

Myth 3

According to Mr. Bagenstos, supposedly a “top Department of Justice attorney in the Civil Rights Division” Washington state “remains kind of stubbornly, an outlier”

Look at the tables above and see for yourself.  By the definition that I understand, Washington is CERTAINLY NOT an “outlier.” 

That’s all for today – more myths to be examined from this episode withing the next few days.

Data Retrieved from the following resources:

Medicaid Expenditures for Long-Term. (n.d.). Retrieved from http://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-and-supports/downloads/ltss-expenditures-fy2013.pdf

(2013). Residential Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through Fiscal Year 2011 (2013). National Association of State Directors of Developmental Disabilities Services (NASDDDS), Human Services Research Institute (HSRI), Association of Professional Developmental Disabilities Administrators (APPDA). University of Minnesota.

United States Census Bureau – Population Estimates – National Totals 2014. (2014). Retrieved from https://www.census.gov/popest/data/national/totals/2014/index.html

Univesity of Colorado Department of Psychiatry. (2015). The State of the States in Developmental Disabilities. Retrieved from http://www.stateofthestates.org/index.php/intellectualdevelopmental-disabilities/state-profiles

 

The Olmstead Decisions is Misinterpreted

 

 

Face the facts

Knowing that more budget cuts are coming down the line it is really time for our legislators and advocates to face the facts.  We’ve listened to the rhetoric long enough and many have come to believe what they have heard –  – but the truth has been misinterpreted too long.

When looking at costs for those with intense support needs we need to look at the costs for that population – not the average of the whole.  These costs are dramatically different.  We can all figure out very easily that when people share costs, the individual costs decrease – this is very simple to understand.  Yet, when we are talking about sharing costs for those with developmental disabilities, this simple fact is totally ignored.

I do not hear any advocates saying that someone is “too disabled” to live in the community and I also do not hear the cost of those with intense support needs who choose to live in a community setting.  So-called advocates do not want this talked about but a few of them have slipped out what their sons and daughters have cost our state to allow them the choice of community homes. Everyone should have the choice but also let’s be honest with what these choices cost – not only to the state but the individual themselves, their families and the local cities and communities.

1.  One young man was able to live in the community with the help of 19 hours of nursing care a day for 17 years.  His situation is talked about frequently to illustrate that those with high medical support needs can live in the community but the fact of his state funded 1:1 nursing care is never mentioned.

2.  One young woman lived in a group home for a couple of years until it closed.  She has lived in the intermediate care facility for about 5 years now and is getting ready to move out to a community home of her own.  Our state has spent over $150,000 sound-proofing and remodeling this home that she will live in by herself – and two staff people 24 hours a day.  She will have a male and a female staff person each of the 3 shifts 24 hours a day every day of the year.  Her staffing costs alone will be over $265,000 a year.  This does not include any other costs for her care in the community.

I understand these are two extreme examples but they are real examples of the level of care that those who live in the intermediate care facility could require if they chose to live in a community setting.  When we are talking about downsizing the ICFs we need to look realistically at the costs and they will be astronomical if we even consider safe and appropriate care as a human right.

These are the types of costs that we need to look at when hard choices are made regarding state funds for where those funds will be applied.  I will argue that denying those who choose the ICF/ID as their home not only denies that person but costs everyone in our state.  The costs are not only dollar amounts but costs of quality of life – quality of life for the person, their family and our communities.

It’s time to face the facts and get real about the situation.  Let’s stop the pretending – the pretending is certainly not beneficial to those we are trying to help.

Cost and Community – Part 1

I have not been involved in politics for very long and it has been a steep learning curve for me.  Prior to my son diving into prolonged crisis I had contacted The Arc of King County for Parent to Parent and other ideas.  There was never a parent to parent “match” for me and the message I got from members of The Arc of King County was for me to go talk to my legislators.  I felt alienated by the very group which was supposedly my advocate.

After several years of crisis after crisis, family destruction, loss of jobs and income, and near loss of life, my son was able to be stabilized in the Residential Habilitation Center (RHC) or Intermediate Care Facility for people with Intellectual Disabilities (ICF/ID).  It was after this that I became to understand the importance of advocacy for our loved ones and I also had time to learn and research on the issue.

I also realized then that The Arc was not an advocate for those with high support needs and this is confirmed over and over again from families.  Most recently a family in crisis in need of a supported living arrangement called The Arc of King County and was told “we only serve higher functioning individuals” and had a “I don’t care attitude” and was very “rude.”

This is not meant to be an attack on The Arc – they have done great work for many but it also needs is noted that they do not speak for the whole community of people with intellectual disabilities and do not support the wide continuum of care which includes intensive support needs of those for whom campus type communities best serve.  I would really like to see this issue addressed seriously rather than being dismissed and disrespected without even listening to the real issues.

I scoured original resources, requested data from state agencies through public record requests, studied many reports and research projects and gathered some great information which could really benefit many.  The problem is that this information has not been shared through the “politically correct” channels and is negated, tossed aside and discounted.  It’s a shame because if people just took the time to look at it and ask questions, they would  learn something new and put information to good use.  This knowledge could help alleviate more crisis.

Reading research articles by reputable authors and published in major journals, I have also seen that research does not address the issues of those with the highest support needs.  The research focuses on those who are higher functioning and what happens is this information is then generalized to the population as a whole.  This is a very dangerous generalization which will backfire.

The two major issues are cost and community and I think that almost all people involved agree that these are critical issues. There are major flaws in how these issues are reported and discussed and this is where there is a great divide.

In upcoming posts I will address the issues of “cost” and “community” and give references to data and research.  My hope is that the logic will come through and people will begin to question the rhetoric that just does not add up and make sense.

 

 

Who really is accountable?

Recently I have been involved in advocating for a young woman to have admission to the Intermediate Care Facility (ICF).  She was on a respite stay at an ICF recently due to an issue in the private home she had been living in – one to which she could not return.  During this respite stay she requested admission to the ICF near her home and family. Admission was “denied” and her guardian was told if she stayed in the ICF for 90 days, she would be eligible for the Roads to Community Living grant and could find a home in a supported living arrangement.

The young woman went home with her mother for transition to supported living.  The problem was that there were no supported living homes available.  Only one agency thought they could accommodate this young woman’s needs and promised much more than they could deliver.  During this “transition” time, one “promise” after another was broken – from issues of roommates, to appropriate room (it was suggested that the bed set so it was partially in the closet – the only arrangement in which a bed would fit in the room), to unsanitary conditions which could lead to health problems for the residents, to no staff able to take this woman out to her frequent community outings.  This obviously was not a safe placement  – yet it was the only one available.

It was at this point that I ran into this young woman at the grocery store  –  what a coincidence!

In the telling of the story, I asked her guardian about the Planned Action Notice, the required written documentation of decisions made by the Developmental Disabilities Administration – the  first step in asking for an appeal.  Without this written notice, an appeal cannot be initiated.  NO written denial had ever been sent – did the Admission Review Team really meet and did they really deny admission?

The guardian requested a copy of the written documentation (which would have been sent 2 months previously) It did not materialize but what did happen was the guardian received several harassing, abusive and threatening emails from the young woman’s DDA Case Manager.  I am not surprised that the documentation was not there but I was surprised by the written threats and harassment the guardian received.

This scenario is a scenario that many advocates are aware of.  The abuse of the rights of our vulnerable citizens.  Decisions are made without going through the legal process and therefore there is no written documentation of the requests for admissions to the ICF.  We hear that no one is denied and we know this is not true.  The reason that the “official” record says that no one is denied is because these decisions are made in secret, are not documented, the decision is not written down, a Planned Action Notice is not sent and the person has no opportunity to appeal.

 

This is unlawful and violates the legal rights of many of our loved ones.  When will this practice be uncovered and when will the department be accountable for not following their policies and the laws of Washington State, let alone the Federal Government?

Homecoming Royalty!

Thomas was chosen by the student body at Shorecrest High School in Shoreline to be part of the Homecoming Royal Court this year.   He is certainly far from being isolated and restricted –

he has flourished from being allowed to grow and learn in the environment which is the least restrictive for him.

When RHC residents move to a community setting, many will need an increase in direct support staff due to the more restrictive environment for them, which will also increase the cost of care.

Moving my son and many others with similar needs from the RHC to a community setting is far from “doing the right thing” and will actually bring restrictions and harm.   “Doing the right  thing” means adhering to the US DD Act and the US Supreme Court Decision Olmstead


not evicting people from their homes because you don’t like where they live. 

Please continue to allow our loved ones to thrive

in the environment which is the least restrictive

 for them!

Doesn’t My Voice count? Let me decide what my community is!

My son Thomas lives in his chosen community. Living in his community enables him to engage in one of the few activities that he can do independently.    Using his savant memory for people’s names together with  his naturally exuberant personality and insatiable desire for talking with people, he greats every person he sees by name and calls out “hi (whoever he sees)” at the top of his lungs and jumps with joy whenever he sees someone coming or in the distance.  If he doesn’t know your name, you will be greeted with “what your name?” and “what country are you from?”  Don’t be fooled though – he will never forget!

Thomas lives at a Residential Habilitation Center (RHC) or Intermediate Care Facility for People with Intellectual Disabilities (ICF/ID or ICF/DD).  This is a campus community and one which suits him perfectly.

Below are some photos from his community:

Thomas’ Secret Garden – growing sunflowers and pumpkins here

Therapy Garden – Raised Beds – Thomas is growing herbs in his bed. He waters and tends to his plants here.

Open field next to the Healing Garden

FIrcrest Chapel nestled in the woods

Community members playing in the open field

Fircrest Healing Garden with wind chimes

Thomas running to the concert – excited about seeing Cowboy Buck and Elizabeth!

Below are some photos of some group homes in Seattle.  Group homes are wonderful for those whom the environment is appropriate but just because it is a group home does not mean that it is the least restrictive environment or a community.

Nice, well-kept group home but certainly not “community” or “least restrictive”

Another well-kept group home but is this “community?”

Community Home on busy arterial without fencing. Is this a safe community setting for a person who elopes?

 Please see this link for other issues with high traffic and group homes:  

Community Homes in High Traffic areas

I fully support a continuum of care and small, community group homes when that is the appropriate setting and truly the least restrictive environment for the individual.  What I am trying to illustrate here is the fact that just because a group home is situated in  a “neighborhood” does not mean that it is less restrictive, more community oriented or more appropriate for the person.  One needs to look at the individual and as both the US DD Act and the 1999 US Supreme Court Decision Olmstead state, the individual together with their family/guardian should be able to make the CHOICE.