Among those of us who care deeply for and about people with developmental disabilities, I hope to hear emerge a new voice, ours, rising together for the benefit of all, harmonizing with reason, respect and hope, and transcending divisions, giving birth to a new era of creative cooperation.

Toward this potential, DD EXCHANGE is for conversation, civil sounding off, sharing of stories, experience, information, resources, and inspiration, giving and receiving support, and creative problem solving.

Finding Your Way Around

TO SEE OTHER'S INPUT: below each post on the right, click "links to this post;" or in the left side column, under "Labels," click the discussion link that interests you.

If there is no comment box below the post, click on
"# comments." It should open one.

TO CONTRIBUTE: add comments to posts in comment boxes &/or submit an article. Comments may also be sent for posting on your behalf. Email address as follows:

EMAIL: ddexchanges@gmail.com

MAILING LIST: add or remove name:
send request to email address, above.

WEB LINKS: to access other websites of interest, in the list to the right, just click on the underlined name.

FOLLOWERS: interested people, websites, organizations, businesses
who follow our discussions & choose to be public about their support.
Become a follower. Public support is a good thing!

Tuesday, April 5, 2016


Written by Cheryl Felak  in response to invitation by S. Frame to comment for a special "comment" story following discovery that King-5's comment section is not available for public viewing.

Dear Susannah,

Thank you for taking the time and effort to do an investigation of the Developmental Disabilities System in our state.   My hope is that there is come clarity that will become evident with a full disclosure of cost distribution, services and the choices of the families and people who live with intellectual disabilities.

As a parent of a young man with profound developmental disabilities and a mental health illness (dual diagnosis) and as a healthcare professional working with many in this population, I understand there is a huge variation in support needs of this population.   There are many reasons why a person/family may choose to live in a campus based community versus scattered homes in the community at large.

I also know from having had my son in both of these settings and from extensive research from the Certified Cost Reports required for each agency to submit annually to DDA, CMS reports, Certificate of Evaluation reports and academic research journals, that the costs analysis used in this series is incorrect.

It is a fact that those with higher support needs have a higher cost to their care than those who may not need as much support.  This is true regardless of the residential setting.  The difference in cost is deceptive due to the fact that only one budget (Developmental Disabilities Administration) is looked at.

When a person lives in a supported living home or other home in the community at large the cost of rent, food, medical, employment support and other supports come from other budgets.  Subsidized rent, food stamps, Apple Health Care, Behavioral Health Care, Vocational support, transportation subsidies are just an example of the different budgets that help support residents in the community.  These costs are not included in any of the cost comparisons of community homes to RHC costs.

Typically, the cost one sees attributed to care in the community is only that of the Direct Support Professional (DSP).  This cost of care for those with high support needs can be much more than the same DSP cost in the RHC given that lack of ability to share staff and resources in scattered homes throughout the community.

Another issue concerning the deception in cost reporting is the use of the “average” cost of community care in reporting the RHC costs more than community care.  What we do know is that for those with high support needs their care costs for direct support only can be as high as $750.00 day for an individual’s direct support care.  In the community each person’s cost of care is known since the agency negotiates with DDA for each contract.  The RHC does not have individual costs applied to each resident and so an average cost must be used.

That being said, we do need to be able to pay the DSPs a higher wage.  This is hard (although rewarding) work and takes a toll on one’s body.  There is a high turnover of staff mainly due to the lack of supports for the DSP – healthcare, short staffing and high use of overtime and a baseline pay that is not enough for one to live on without working 2 or 3 jobs. 
We do have a shortage of providers but the reasons are not due to the RHC – they are due to limits put on bed usage and pay by the legislature.

We cannot let neglect become the standard of care by underfunding these critical services.
Written/submitted to K-5, by Cheryl Felak, RN, Parent/Guardian