From: Summer Harrison <summer@aloha.

net>
Date: June 29, 2009 12:25:30 PM HST
To: OCRComplaint@hhs.gov
Subject: Complaint re Hawaii violations of Olmstead decision

I'm the mother of a ten year old child with multiple disabilities. She is a
participant in Hawaii's 1915(c) waiver program for individuals with developmental
disabilities. Her doctor stated that 24/7 line of sight skilled nursing was
medically necessary for my daughter, and she has had this level of skilled nursing
since November 2006.

In February the state moved all the 1915(c) waiver participants into an
experimental 1115 project. Medicaid is now operated by two profit making
insurance companies.

With the reorganization that took place in February 2009, Hawaii's only remaining
participants in a 1915(c) waiver program were individuals with developmental
disabilities. By February 1, 2009, the Hawaii DD waiver program has cut its
services to program participants between 15% and 70% since last July 1, and are
telling families and service providers that more cuts are on the way.

Families are told to get in touch with their Medicaid Managed Care Organization to
find out about additional services. The Managed Care organizations, as profit
making entities operating under a different "budget neutrality" definition than
the 1915(c) waivers, are basing care level decisions based on profit and loss
rather than the individual's needs.

The primary cuts have been made in the home and community based supports needed to
keep my daughter and other individuals with special health care needs at home with
their families. These cuts are violations of the rights of these individuals
under the Olmstead decision.

My own daughter's service level has not been cut. We received notice of a 15% cut
in nursing services, filed an informal appeal, the appeal was held by phone on
March 9, and there has been no response to date. Therefore my daughter Hannah has
continued to receive her nursing hours.

Virtually everyone else has been cut.

I also feel that moving the management of my daughter's medically necessary

medical care from a 1915(c) waiver program to an 1115 experimental project without
my knowledge or permission is a violation of our civil rights to participation in
her health care decisions. The distinction between the two types of medicaid
delivery systems -- one operated by the state, the other by two for-profit MCOs --
means that home and community based services are now being evaluated from a profit
standpoint by a private corporation. The "budget neutrality" requirements for the
1115 programs allows home support services to be evaluated on a budgetary profit
and loss basis, regardless of medical need and/or necessity.

This violates the civil right for self-direction of the supports needed to
maintain care in the least restrictive environment -- the homes of family and
friends who love and caregive for our citizens with disabilities. Families are
now being told directly that decisions over home care will be made on a financial
basis, with one mother actually being threatened with institutionalization of her
3 year old.

The 1115 experimental project also places responsibility for operating funds
dedicated under EPSDT with the MCOs. The MCOs are over-riding doctor letters
stipulating medically necessary levels of care and services based on their own
(the MCO's) financial budget.

I am asking for OCR, please, to open an investigation of the state of Hawaii for
violations of the Olmstead decision as a result of cuts made to medicaid home and
community based service programs and supports. These cuts have been made since
July 1, 2008, which means they fall within the MOE requirement time period.
Hawaii has received ARRA 5001 funds yet services have not been restored.

Thank you.

I submitted by an email an earlier complaint on January 11 that I did not follow

up on. I was a part of a class action suit filed against Hawaii for violating
Olmstead, and was under a gag order.

Summer Harrison
www.disabilitymom.blogspot.com

Representing my daughter, Hannah Harrison