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PP1
Brain Injury Association of America
MedicaidIndependence Plus
May 9, 2002A Demonstration Program for Family or
Individual Directed Community Services
• Person-Centered Planning;
• Individual Budgets;
• Group Living No More Than 4 Persons;
PP2
Brain Injury Association of America
Independence Plus, cont.
• Target Groups: NEW, first time ever listed on a Medicaid Waiver Form…………….
Brain Injury (Acquired)
Brain Injury (Trauma)
PP4
Brain Injury Association of America
Nursing Home Residents
Age Distribution:Under 65 years - 8.5%65-74 years - 12.3%75-84 years - 32.8%85 years and over - 45.9%
Source: National Center for Health Statistics March 1, 2000
All families-1997Total: 1,608,700
PP6
Brain Injury Association of America
Self Determination 2001
• People With Brain Injury Are
“Speaking Out”
About Quality in Services
National Center on Outcomes Resources
(410) 583-0060
Info@the council.org
PP7
Brain Injury Association of America
Speaking Out
• “I don’t want to feel that I am just getting the same prepackaged deal as everyone else. Make it about ME.”
• “My goals should be just that…MY choice.”
• “Before you ‘release’ me to the community, help me to build a support network.”
PP8
Brain Injury Association of America
Speaking Out
• “I still have a vision for my future. Don’t take that from me. Rather, help me make it clearer.”
• “Invite me to the table where decisions are made about me. Welcome me and adapt my environment so that I can function at my maximum potential.”
PP9
Brain Injury Association of America
Speaking Out
• “Please be honest about what you can and cannot offer me. If there are limits and caps, let’s negotiate priorities together. Take the time to know me as a person. Take the time to find out who I was before the accident. My self-esteem is tied to who I was yesterday and who I am today.”
PP10
Brain Injury Association of America
Speaking Out AboutQuality of Life
• “Quality of life is freedom and independence.”
• “Quality of life is having the opportunity to wake up in the morning with a purpose and the ability to pursue it.”
• “Quality of life is having the opportunity and tools to achieve my goals.”
PP11
Brain Injury Association of America
NIH Consensus Development Conference, October 1998
Rehabilitation of Persons with
Traumatic Brain Injury
PP12
Brain Injury Association of America
NIH Panel Recommendations
• Rehabilitation Services should be matched to the needs, strengths, and capacities of each person with TBI and modified as those needs change over time.
• Rehabilitation Programs for persons with moderate or severe TBI Should be interdisciplinary and comprehensive.
PP13
Brain Injury Association of America
NIH Panel Recommendations-2
• Families and significant others provide support for many people with TBI. To do so effectively, they themselves should receive support. This can include in-home assistance from home health aides or personal care attendants, daytime and overnight respite care, and ongoing
counseling.
PP14
Brain Injury Association of America
NIH Recommendations-3
• Rehabilitation efforts should include modifications of the individual’s home, social and work environments to enable fuller participation in all venues.
PP15
Brain Injury Association of America
NIH Recommendations-4
• Community-based nonmedical services should be components of the extended care and rehabilitation available to persons with TBI. These include but are not necessarily limited to clubhouses for socialization, day programs and social skills development programs, supported living programs and
PP16
Brain Injury Association of America
NIH Recommendations-5
• Independent living centers, supported employment programs, formal education programs at all levels, case manager programs to support practical life skill redevelopment and to help navigate through the public assistance and medical rehabilitative care systems, and consumer,
• peer support programs.
PP18
Brain Injury Association of America Brain Injury Association,
Inc.
FROM A CONTINUUM OF
CARE TO AN ARRAY OF
INDIVIDUAL AND FAMILY
SUPPORTS
PP19
Brain Injury Association of America
PRINCIPLES OF SELF DETERMINATION
• FREEDOM
to plan a real life• AUTHORITY
to control a limited amount of resources• SUPPORT
for building a life in one’s community• RESPONSIBILITY
to give back to one’s community
PP20
Brain Injury Association of America
Goals of the ADA
• Equality of Opportunity
• Full Participation
• Independent Living
• Economic Self Sufficiency
PP21
Brain Injury Association of America
ADA Integration Mandate
“A public entity shall administer services, programs and activities in the
most integrated setting appropriate to the needs of qualified individuals with
disabilities” 28 CFR Section 35.130(d)
PP22
Brain Injury Association of America
Belonging
be-long, v. 1: to feel and be a part of …i.e. of a community, a workplace, a neighborhood or school 2: to enjoy a sense of contribution, value, self-worth 3: to truly believe one is a natural and equal part of the whole 4: comfortable, safe, cared for, welcome.
PP23
Brain Injury Association of America
A Successful Community Life
• Housing
• Health Care and Appropriate Medical Services
• Mental Health/Behavioral Health Services
• Education/Higher Education
• Employment/Supported Employment
• Transportation
PP24
Brain Injury Association of America
Successful Community Life - 2• Assistive Technology and Devices
• Leisure and Recreational Activities
• Friends and Relationships; Support Circles
• Community Support Workers
• Customer Choice and Control
• System Infrastructure
• Quality Assurance
PP25
Brain Injury Association of America
Any item, piece of equipment or product system whether acquired commercially off the shelf, modified or customized that is used to increase, maintain or improve functional capabilities of individuals with disabilities.
Assistive Technology Device
PP26
Brain Injury Association of America
Assistive Technology and People with Cognitive Disabilities
• Brain Injury Association of America
• Moss Rehabilitation
• Temple University
• University of Akron
• Spaulding Rehabilitation
PP27
Brain Injury Association of America
Falls and TBIAmong Older Adults Aged >65
• Two-thirds of all fall-related TBI deaths occur among older adults
• One-half of all fall-related TBI hospitalizations occur among older adults
Pacific Inst. For R&D, Unpub. Data, 1997
PP28
Brain Injury Association of America
Costs of Fall-Related TBI’s inOlder US Adults Aged>65(1997)
• Estimated total lifetime costs for fall related TBI’s were $3,300,000,000 ($3.3Billion)
- Two-thirds of these costs were among those aged 75 and older
• The average lifetime cost per person was $180,000
Pacific Inst. For R&D, Unpub. Data, 1997
PP29
Brain Injury Association of America
Percentage of US Population Over 65 Years of Age
0
5
10
15
20
25
1950 1970 1990 *2010 *2030 *2050 *2070
Percentageof US
population over 65
* projections
PP31
Brain Injury Association of America
Elder Fall Prevention Act of 2003
S. 1217 June 9, 2003• Senators Enzi and Mikulski• To develop effective public education
strategies carried out by the National Safety Council
• To expand needed services and conduct research in prevention and treatment
• To evaluate the costs to Medicare and Medicaid and potential for cost reduction
PP32
Brain Injury Association of America
Family Helpline1-800-444-6443
Over 17,000 calls in 2002
Se Habla Espanol
PP34
Brain Injury Association of America
National Information Center for Traumatic Brain Injury
• Three year cooperative agreement• $250,000 in year 1• Pilot in Mississippi and Wisconsin• Opportunities to leverage private corporate
dollars• One universal 800 number widely
advertised and disseminated; uniform data base; information and linkage to services
PP36
Brain Injury Association of America
AACBIS Corporate Advisory Council
• Bancroft Neurohealth
• Casa Colina Centers for Rehabilitation
• Centre For Neuro Skills
• Gentiva Rehab Without walls
• Lakeview NeuroRehabilitation Centers
• Learning Services Corporation
PP37
Brain Injury Association of America
AACBIS Corporate Advisory Council (cont.)
• The May Institute, Inc.
• The Mentor ABI Group
• Rainbow Rehabilitation Centers Inc.
• ReMed
• Robert Voogt & Associates