To: NDSC and NDSS Members and Affiliated Parent Groups
From: Susan Goodman, Director, Governmental Affairs, National Down Syndrome Congress
Madeleine Will, Vice President and Director
National Down Syndrome Society Policy Center
DATE: February 28, 2008
Newsline Legislative Update
On February 27, 2008 the Pre-Natally and Post-Natally Diagnosed Conditions Awareness Act (S. 1810), co-sponsored by Senators Edward Kennedy (D.MA) and Sam Brownback (R.KS) was “voted out of the committee.” This means that the next step is for the bill to be scheduled for a vote by the full Senate. Senate staff thanked NDSC and NDSS for our efforts in moving the bill. Although this is a great victory, our work is far from over! We will continue to track all developments in the Senate.
The next step is for a bill to be introduced and passed in the House of Representatives. It is likely that a bill will be introduced soon and the process of moving it through will begin. We will, as always, keep readers updated and Call for Action at times when our advocacy efforts will be most effective.
The bill that was reported out of committee will be posted on http://thomas.loc.gov/. However, the precise time is not known. At that time we will publish a summary of the contents of the bill.
The Community Choice Act of 2007
The following information is critically important to all families, regardless of the age of your family member. Sooner than later, we need to become more politically active to secure the funding necessary for "Community Choice" through Medicaid. Writing a letter to your Representatives and Senators, attending hearings, testifying before a panel, traveling to Harrisburg...whatever your time and energy allows. For our family members to have the support they need to be included in our communities, in whatever capacity, the funding must switch from "institution" support to "community" support. The employment figures for people with disabilities is horribly low. For a collection of reasons, the vast majority of our children are not sufficiently prepared through our school systems to lead inclusive, productive adult lives. We need the financial support to continue preparation after "graduation". The following information helps clarify this need.
Use this link to get contact information for your State Representatives and Senators..
http://www.legis.state.pa.us/
The Community Choice Act of 2007
(S. 799 /HR ___): A Summary
The Community Choice Act gives people real choice in long term care options
by reforming Title XIX of the Social Security Act (Medicaid) by ending the
institutional bias. The Community Choice Act allows individuals eligible for
Nursing Facility Services or Intermediate Care Facility Services for the
Mentally Retarded (ICF-MR) the opportunity to choose instead a new
alternative, "Community-based Attendant Services and Supports." The money
follows the individual!
In addition, by providing an enhanced match and grants for the transition to
Real Choice before October 2011 when the benefit becomes permanent, the
Community Choice Act offers states financial assistance to reform their long
term service and support system to provide services in the most integrated
setting.
Specifically what does this bill do?
1) Provides community-based attendant services and supports ranging from
assistance with:
activities of daily living (eating, toileting, grooming, dressing, bathing, transferring),
instrumental activities of daily living (meal planning and
preparation, managing finances, shopping, household chores, phoning,
participating in the community),
and health-related functions.
2) Includes hands-on assistance, supervision and/or cueing, as well as help
to learn, keep and enhance skills to accomplish such activities.
3) Requires services be provided in THE MOST INTEGRATED SETTING
appropriate to the needs of the individual.
4) Provides Community-based Attendant Services and Supports that are:
based on functional need, rather than diagnosis or age;
provided in home or community settings like -- school, work,
recreation or religious facility;
selected, managed and controlled by the consumer of the services;
supplemented with backup and emergency attendant services;
furnished according to a service plan agreed to by the consumer;
and that include voluntary training on selecting, managing and dismissing
attendants.
5) Allows consumers to choose among various service delivery models
including vouchers, direct cash payments, fiscal agents and agency
providers. All models are required to be consumer controlled.
6) For consumers who are not able to direct their own care independently,
the Community Choice Act allows for "individual's representative" to be
authorized by the consumer to assist. A representative might be a friend,
family member, guardian, or advocate.
7) Allows health-related functions or tasks to be assigned to, delegated to,
or performed by unlicensed personal attendants, according to state laws.
8) Covers individuals' transition costs from a nursing facility or ICF-MR to
a home setting, for example: rent and utility deposits, bedding, basic
kitchen supplies and other necessities required for the transition.
9) Serves individuals with incomes above the current institutional income
limitation -- if a state chooses to waive this limitation to enhance
employment potential.
10) Provides for quality assurance programs which promote consumer control
and satisfaction.
11) Provides maintenance of effort requirement so that states can not
diminish more enriched programs already being provided.
12) Allows enhanced match (up to 90% Federal funding) for individuals whose
costs exceed 150% of average nursing home costs.
13) Between 2007 and 2011, after which the services become permanent,
provides enhanced matches (10% more federal funds each) for states which:
begin planning activities for changing their long term care
systems, and/or
include Community-based Attendant Services and Supports in their
Medicaid State Plan.
SYSTEMS CHANGE
14) Provides grants for Systems Change Initiatives to help the states
transition from current institutionally dominated service systems to ones
more focused on community based services and supports, guided by a Consumer
Task Force.
15) Calls for national 5 -10 year demonstration project, in 5 states, to
enhance coordination of services for individuals dually eligible for
Medicaid AND Medicare.