You are here: Home Resources Testimony House Children & Families Committee

Testimony House Children & Families Committee

January 18, 2011

Click here to download pdf version

HCBS DD Waiver Waiting List Data
Good morning Chairman Kiegerl and Members of the Committee, my name is Tim Wood. I am the Campaign Manager for the End the Wait Campaign. Thank you for allowing me to appear before you today. The End the Wait Campaign is a statewide issue campaign working to educate the public and policymakers about why Kansas needs to take bold action in order to end the Developmental Disability (DD) Waiting List. The End the Wait Campaign is a collaborative project of the Disability Rights Center of Kansas (DRC) and numerous stakeholders, funded through a generous grant by the Kansas Council on Developmental Disabilities (KCDD). The ultimate goal of the End the Wait Campaign is to successfully end all Waiting Lists for the Developmental Disability (DD) Waiver.  There are currently 3413 adults and children on the DD Waiting List. What we define as the DD Waiting List really consists of two separate lists.
The first list – called the “Unserved” Waiting List – is where an initial request for services has been made, but the person is not receiving any services. This “Unserved” Waiting List has an average wait time of 31 months for adults and 29 months for children. The second waiting list – called the “Underserved” Waiting List – consists of those who have cleared the first waiting list, start receiving some of their services only to find that they are put on a second waiting list for the rest of the services they need. The services are not “extra” or luxury-type services. These are services that according to their individualized assessment and plans of care are absolutely necessary, however, they are forced to wait on an “Underserved” Wait List anyway. This second “Underserved” Waiting List has an average wait time of 32 months for adults. It is important to note that because children in need of services have largely been limited by the State to receive only Supportive Home Care – the state does not provide 2 an effective or accurate estimate for children with DD on the Underserved Waiting List. The data I have for you today is for all persons who have a service request date of December 1, 2010 or earlier.

Unserved Waiting List Statewide Numbers – The most current numbers show that there are 1440 children and 960 adults on the Unserved Waiting List (total of 2400). These are Kansans who receive no DD Waiver services.
· It’s important to note that according to the latest SRS data, the
person who is next in line on the “Unserved” list to receive
services has been waiting since May 1, 2006 (55 months). Let me
let that sink in for a moment. That means that the “lucky” person at
the front to the Unserved Waiting List line has been forced to wait
without any DD Waiver services for over 4.5 years!

Underserved Waiting List Statewide Numbers – According to SRS, the number on the Underserved Waiting List is 1013 adults. As previously mentioned, because of the way SRS tracks the data we cannot provide an accurate estimate for children with DD on the Underserved Waiting List.

  • · To put into perspective how utterly cruel this second Underserved Waiting List is, let’s take the example above of the person at the front of the Unserved Waiting List who has been waiting without services for over 4.5 years. Let’s say that person clears the waiting list today. They think to themselves “great, now I can get the services I have been waiting nearly 5 years for.” Not so fast. Their individualized plan of care may say that they need both day and residential services. When the magic date happens and they clear the Unserved Waiting List, they may be offered only day services and they are thenput on a second Underserved Waiting List for residential services.So, they still have nowhere to live. They will then wait on this Underserved Wait List on average for an additional 32 months! This is on top of the over 55 months they waited on the Unserved Wait List. All total, this “lucky” person with profound Developmental and Intellectual disabilities who is at the front of the line will have been waiting for over 7.5 years just to receive the services they need to accommodate their disabilities.

In the chart below I have provided for each of you the number of individuals on the Waiting List specific to your home counties. If you would like to see statewide data (by county) please refer to the attachment provided in your packet:

Number of Kansans on the DD Waiting Lists In Your Home Counties

Member

Co.

Adult

Unserved

Children

Unserved

Adults

Underserved

Children

Underserved

Total

Rep. Kiegerl

JO

125

248

274

0

647

Rep. Wolf

BT

10

10

14

0

34

Rep. Gatewood

SN

59

105

64

0

228

Rep. Brunk

SG

219

300

153

0

672

Rep. Gregory

DG

FR

35

15

64

9

63

12

0

0

162

36

Rep. McCray-Miller

SG

219

300

153

0

672

Rep. Meigs

JO

125

248

274

0

647

Rep. Roth

SA

18

46

33

0

97

Rep. Rubin

JO

125

248

274

0

647

Statewide

ALL

960

1440

1013

0

3413

 

The final chart I want to explain is attached to my testimony – titled “HCBS
DD Waiting list (Unserved & Underserved).” This chart tracks the DD
Waiting List over the past 16 years. As you can see, the last time the
waiting list was virtually eliminated was right after the closure of Winfield
State Hospital. That’s because all of the dollars from the savings of the
closure of Winfield stayed in the DD system in the form of new dollars to
the HCBS DD Waiver. As you can see, the waiting list was 800 in FY 95
and it plummeted to around 50 in both FY 97 and FY 98. The savings
stayed in the DD Waiver, and the waiting list was next to nothing. A waiting
list of 50 means that you are waiting a few weeks or a couple of months for
services, which is reasonable and manageable for Kansas families. The
current reality is neither reasonable nor manageable. Today a person can
be waiting for 5 years to clear the Unserved list and maybe an additional 3
years to clear the Underserved list. Today the Waiting List has ballooned
to 3413. We must work in a concerted effort to reverse this trend and
eliminate the DD waiting list.
4
Naturally, you may be wondering how an individual comes off of the
Waiting List. There are two primary ways in which an individual can access
services through the HCBS DD Waiver: either through the appropriation of
additional funding or due to a crisis situation. Since FY 2006 (which are the
only numbers available according to SRS) there have been 1348 people
who have moved off the Waiting List because funds became available
(either through appropriations or because someone else transitioned off the
Waiver) and 1895 who moved off because they were determined to have
been in crisis.
Number of Kansans with a DD who have moved off the Waiting List

FY

# of Unserved Accepting Waiting List Funds

# Underserved Accepting Waiting List Funds

Total Persons Accepting Waiting List Funds

# of Unserved Determined in Crisis

# of Underserved Determined in Crisis

Total Persons Determined in Crisis

FY06

*

*

262

**

**

295

FY07

288

107

395

**

**

256

FY08

315

120

435

140

148

288

FY09***

0

0

0**

197

225

422

FY10***

0

0

0**

187

253

440

FY11****

196

60

256

80

114

194


* According to SRS the Unserved and Underserved numbers for the waiting list
funds were not tracked
** According to SRS the Unserved and Underserved numbers for crisis were not
tracked in FY 06 and FY 07
*** Waiting list funds were not appropriated in FY 09 & FY 10
**** As of December 1, 2010
In his Inaugural Speech, Governor Brownback spoke of the core virtues
Kansans hold most dear. The Governor said that Hope, Freedom, and
Opportunity are central to the Kansas experience and that as Freedom
expands so does Opportunity. Kansans with Intellectual or Developmental
Disabilities and their families share those values. Freedom to make
important choices about their own lives. Freedom to be included in every
segment of society that anyone without a disability would be able to
participate in. Opportunity to do things that they or their families may have
5
never thought possible. Hope to live in their own apartment or to hold a
job. They want to have friends, socialize freely, and pursue their own
dreams. The DD Waiver gives them the Freedom and Opportunity to live
their lives with Hope, dignity and respect.
Mr. Chairman and Members of the Committee, in the same spirit of Hope,
Freedom, and Opportunity Governor Brownback expressed in his Inaugural
Speech, I respectfully ask that that you seriously examine ways the
Legislature could significantly and aggressively address the needs of this
population. Doing this will give some of our most deserving citizens the same Hope, Freedom, and Opportunity we all seek for ourselves, our families, and our friends.
I thank you for this opportunity and I look forward to working with each of you to find real common sense solutions to End the Wait in Kansas.

Click here to download pdf version