As you know, the Medically Complex Children’s Waiver, is a
pilot program for children 0-18yrs old, who live at home, do not receive
Medicaid currently, have an SSI designation, and complex medical needs
(disabilities involving multiple body systems with very frequent hospital
stays, surgeries, clinic visits, therapies, and continuous support for daily
living). The waiver gives families an opportunity to use Medicaid as a
secondary insurance and receive respite services. It’s literally been a
lifesaving for families who would otherwise be bankrupt or homeless because of
the excessive cost of caring for their child’s medical needs. HB 100 is the
bill to continue this as an ongoing program in Utah. It passed
favorably out of the house, and now moves to the senate. If you are aware
of families who are using MCCW or would be eligible for the waiver, please
share the following alert from the MCCW FB page. This bill must pass out of the
Senate Economic Development and Workforce Services Committee to be considered
by the full Senate. Emails from providers would be good too. The committee
meets tomorrow morning so calls and emails need to go out TODAY! I’ve attached
the talking points for HB100.
*Action Needed* - Ok everyone we are in desperate need of
help. HB100 has been assigned to the Senate Economic Development and Workforce
Services Committee. This is not the committee that would typically be assigned
to this type of topic. These Legislators are not very familiar with MCCW and
some may not have heard of it at all. If HB100 does not pass out of committee
with a favorable recommendation the program dies. We are going to need everyone
to step up and help more so than ever.
1. Call, email and meet with every member of the committee. There are 500+ kids on this program which means these Senators should be getting hundreds of emails and phone calls about the program (I’ll post contact information below).
2. We must have people show up to the Capitol on Monday during Senate floor time and help pull members of the committee off the floor and talk to them in person. These face to face meetings leave an impression that cannot be expressed in an email and there is no guarantee an email even gets read so we must talk to them.
3. We need lots of people to testify in Committee on Tuesday February 13th at 9:00 am Room 215 Senate Building. So far we’ve had maybe 12 people total testify out of 500. What kind of message does that send? We have to pack that room! We get it, you’re busy, it’s early, but if you want this program to continue you have to show them it’s important to you.
Please share far and wide. We need to work together to make this happen.
1. Call, email and meet with every member of the committee. There are 500+ kids on this program which means these Senators should be getting hundreds of emails and phone calls about the program (I’ll post contact information below).
2. We must have people show up to the Capitol on Monday during Senate floor time and help pull members of the committee off the floor and talk to them in person. These face to face meetings leave an impression that cannot be expressed in an email and there is no guarantee an email even gets read so we must talk to them.
3. We need lots of people to testify in Committee on Tuesday February 13th at 9:00 am Room 215 Senate Building. So far we’ve had maybe 12 people total testify out of 500. What kind of message does that send? We have to pack that room! We get it, you’re busy, it’s early, but if you want this program to continue you have to show them it’s important to you.
Please share far and wide. We need to work together to make this happen.
Budget Request HB100
Medically Complex Children’s Waiver
Background
- History of Medically Complex Children’s Waiver
(MCCW)
- During the 2015 General Legislative Session
HB199 was unanimously passed.
- HB199 (2015) was a 3 year pilot program that
directed the Department of Health to apply for a Medicaid waiver for
children with disabilities and complex medical conditions. Without
further funding the pilot will sunset in 2018.
- HB199 (2015) was appropriated $3.2 million of
one-time funds “to be used in similar amounts over three years with the
goal of serving a similar number of clients over three years.” An
additional $1,000,000 of one-time General Funds was appropriated to the
program during the 2016 General Session.
- MCCW provides children and families with
approximately 3 hours per week of respite and enrolled children have
access to services covered through the traditional Medicaid program.
Enrollment
- The Department of Health held
three open application periods since the program was authorized in 2015
(October 2015, May 2016 and May 2017).
- This waiver serves the
following population:
- Children ages 0-18
- Children who have 3 or more specialty physicians
- Children who have 3 or more organ systems involved in their
disability
- Children who have a SSI Disability Designation through the SSA or
a disability determination by the State Medical Review Board.
- The program currently serves approximately 580
children.
Outcomes
- The Department of Health estimates that the
general fund program per member per month (PMPM) is $322.50. In stark
contrast with the annual cost of $169,000 to $200,000 for a child who has
been institutionalized.
- Approximately 84% of MCCW enrollees have
private health insurance coverage that is the primary payer, therefore
allowing for lower MCCW appropriation expenditures than originally
anticipated.
- MCCW allowed Local Education Authorities
(LEAs) to maximize their state dollars to draw down federal Medicaid funds
for required services. “Once children were enrolled in the MCCW, the LEAs
only needed to pay the state matching funds ($307,330) for school based
services rather than shoulder the entire cost ($1,022,011). With the
availability of federal Medicaid funding, this program resulted in
$714,680 of state fund savings.
- MCCW families have reported improved outcomes
through reduced medical debt, increased ability to pay for basic household
necessities, improved employment, reduced need to forego or delay child’s
needed treatment and reduced out of pocket expenses.
- The ability to utilize respite care has decreased
families’ feelings of isolation, reduced feelings of neglecting other
important family relationships, increased ability to cope with caring for
medically complex child and decreased feelings of being completely
overwhelmed.
Request for On-Going Funding
- $2.25 million on-going General Fund
- Using the estimated PMPM and assuming
enrollment at current levels to maintain the program on an on-going
basis.
Families’ Experiences
The following are
excerpts from letters written by parents of children enrolled in the MCCW. Used
with permission of the families.
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