Why didn’t you use your award?

92% of the families who received Individual Family Support funds used less than 80% of their award.  41% used nothing.

I want to ask these families why they didn’t use these funds.  I cannot imagine that they didn’t need the money so there has to be some reason why these families did not access these allowed funds that were awarded to them to help with the care of their family member with developmental disabilities.

IFS Level

# clients

Current Award

Number of clients and the percentage of the award they used in the plan year

0%

1-20% 21-40% 41-60% 61-80% 81-100%

1

141

2000

76

24

12

10

6

13

2

319

3000

144

60

42

32

18

23

3

485

4000

176

108

74

65

28

34

4

203

6000

74

39

28

24

20

18

 total

1148

470

231

156

131

72

88

This chart was taken from the Rule Change WSR 13-17-062

WSR 13-17-062 (1)

I cannot believe that these families did not need these funds yet this is apparently what DDA believes.  Without knowing why these funds were not used, how does DDA know that the families who unused funds will be re-distributed to will be able to use these funds?

Or is this just an attempt to “serve” the unserved without actually “serving’ them.  Looks good on paper but in reality is nothing.

Please contact me regarding information you would like to share regarding your IFS funds.  I am collecting responses (can me anonymous) to make a report.

1.  What was your award amount?

2.  How old is your child?

3.  What is the child’s disability?

4.  What did you use the funds for?

5.  Were funds denied for services or equipment you requested?  If so, what was the reason?

6.  Were you able to find services that you needed?

7.  Was the lack of service providers or quality of service providers an issue in being able to utilize these funds?

If you are willing to answer the questions above, I would appreciate it.  This will help with insight into the problems with this program and how to help those in need.

You can contact me at:

becausewecareWA@gmail.com

Rule changes to serve “the unserved”

rule making

 

Washington State Department of Social and Health Services and the Developmental Disabilities Administration (DDA) has posted immediate rule changes to increase the capacity of families enrolled in the Individual Family Support Program (IFS).  The reason behind this change is to “enable families to continue caring for their family members in their own homes and help stabilize families and individuals who are experiencing increased caregiving stress and crisis by providing respite from their caregiving duties.” I wholeheartedly support the idea behind this rule  change but also understand that this is an attempt of too little, too late and does not even address the real issue.

DDA states that the families receiving funds at this time are not utilizing their full “awards”.  DDA reports that only 55% of the IFS funds were used for respite and that  only 8% of the total number of families have used 81-100% of their awards.  (see attached for full explanation and percentage of funds utilized) WSR 13-17-062 Rule Change for IFS

It is extremely unfortunate for our families in need that the right question is not being asked and therefore, the solution DDA proposes will not address the problem.

The right question is – When you have families in need and they are awarded funds for services which would help relieve some of their crisis, why are they not using the funds provided?

Asking this question might give some answers to the problem.   DDA skipped this important question in determining a solution. DDA has concluded that since these families are not using the funds, they don’t need them and so DDA has decided to reduce the award and give the unused portion to other families in need.  On the surface, this is a logical solution, but again, it is not the answer to the question that needed to be asked.

The real problem is that our state has put a limit on the number of caregiving agencies families are allowed to use with these funds. These contracts are only opened up every 3 years so no matter how much money is awarded,  we do not have caregivers who the state will allow these families to use these funds for.  We do have caregivers available, but since the state has closed their contracts, these families in crisis can not access the use of these qualified caregivers.

I know this for several reasons – as a family who had been awarded funds for respite and not being able to hire a contracted caregiver I was well aware of the situation in the family.   The funds were useless without a caregiver to use them for.  In no way did this mean that we did not need a caregiver  – it meant that there were no qualified, contracted caregivers available.  This not only drove us into deeper crisis.

Now I work for a Home Health Care Agency.  We are licensed, bonded, run extensive background checks on our employees and all caregivers are certified nursing assistants who are supervised by a registered nurse.  I was excited to work for this locally owned and operated agency for several reasons  – one of which was that I could be part of the solution (or so I thought) to the caregiving crisis experienced by our families.

What I found out was that DDA contracts  (although supposedly the waivers are participant driven with respect to choice of providers) were not available.  We were informed that Roads to Community Living, COPES and the New Freedom waiver had sufficient caregivers to serve their clients.  We were denied a contract with the Health Care Authority based on a WAC which pertained to agencies which had their contracts terminated ( given this was our first application this WAC did not even pertain to our agency).  We still have not had an answer to our inquiries and are bounced between various people – no one being able to give accurate information.

 

No wonder our families are in crisis – the Department which is there to help them and navigate them through crisis does does not know their own rules, policies and how to connect a quality care agency to those in need.

So, DDA has a long way to go in trying to solve this problem.  Given that they do not even know the questions to ask to investigate what the problem is and make up solutions to non-existent problems, there is little hope for improvement.

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