- TITLE: Social Security, Access to Healthcare, Community-Based Waiver, Supported Living, Personal Assistance, and Cash and counseling at the Physical Disabilities through the Lifespan Conference- July 21-22, 2003
- Speakers: Sue Roecker, Social Security Administration; Gerben DeJong, Ph.D., Brooks Center for Rehabilitation Studies; Robert Master, Boston University; James Kennedy, Washington State University; and Laurie Rusinowitz, University of Maryland. (Katherine Cargill-Willis 3/16/04)
- Social Security:
- Pays $42 billion monthly to 50 million people
- Processes 5 million new claims every year
- Handles 55 million 800-number phone calls
- Hosts 40 million annual visits to the website
How does SSA reduce poverty?
- More than half (55%) would be poor without Social Security
- Close to one-fifth (19%) are poor with their Social Security
For disability programs, disability insurance and Social Security Income, the medical requirements are generally the same. The disability needs to last a full year or be expected to end in death.
The Disability determination process
- Is the person working?
- Is the condition severe?
- Is the condition found on the list of disabling conditions?
- Can the person do the work they did previously?
- Can they do any type of work?
There are special requirements for blind persons
Social Security Disability Insurance
- Average benefit is $833 a month for worker depending on earnings
- Benefits can also be paid to a spouse, a wage earner’s disabled widow or widower, young children or disabled children
Supplemental Security Income
- Meet medical requirement
- Be within income and resource limits
- Automatic Medicaid coverage in most states
Return to work
- National policy is to help people with disabilities lead independent and fuller lives
- A variety of incentives are available under both SSI and SSDI programs
The "Ticket to Work" is the newest program. The program is voluntary and includes employment and vocational services through Employment Networks.
Future programs
- Building an electronic disability case processing system
- Improving and expanding Internet services
- Developing other short term and longer term disability programs
- Access to health care for individuals with disabilities
People with disabilities are at greater risk of the following conditions than the general population:
- Respiratory illness
- Cardiovascular disease
- Lung cancer
- GI Distress
- Mental illness
- Substance abuse
- Endocrine disturbances
Ways to characterize the health care needs of people with disabilities
- They have a thinner margin of health
- More limited opportunities to participate in preventive health and healthy activities
- Earlier onset of chronic health conditions
- Secondary functional losses
- More complicated and prolonged treatment
- More sustained pharmacological support
- Need durable medical equipment and devices
- Long-term services like personal assistance
Some of the most compelling health issues in the general population are also compelling issues for people with physical disabilities and the consequences are more severe. There are fewer opportunities for individuals with disabilities to participate in vigorous exercise.
Two types of access to health care issues
Physical, social, and communication barriers: Physical accessibility, transportation and the lack of “disability literacy” causing health care providers to speak to the person accompanying the person with the disability instead of the person with the disability.
Financial and health plan coverage issues: Greater participation in Medicare and Medicaid programs: People with more severe limitations are more likely to participate in a health plan because they are more likely to be eligible for the Medicare and Medicaid programs.
Medical necessity-What is in a health plan is not necessarily what you get, which is a bigger problem for people with disabilities who are likely to need the services of specialists and post acute providers. The definitions of medical necessity do not recognize the need to maintain or enhance function.
Access to specific health care
- Primary and preventative health care: Most primary care physicians are ill equipped to care for people with disabilities and they slow down a busy practice. Managed care plans are somewhat better at providing primary care. The record for preventive health care is mixed; people with disabilities are more likely to get annual physical exams but less likely to get cholesterol checks or pap smears.
- Specialty care: Disabling conditions often involve multiple body systems and multiple illnesses that are not well understood by primary care physicians. Managed care plans are worse at providing access to specialty care.
- Rehabilitation: There are multiple venues and differences among health plans. The post-acute payment system has affected access and quality of: skilled nursing facilities, inpatient rehabilitative facilities and home health agencies. There are caps for rehabilitation.
- Durable medical equipment and assistive technology: Essential to health, function and independence for people with disabilities and when not received, people are likely to have detrimental and potential health care consequences. Health plans have complex policies and guidelines that should have medical necessity definitions.
- Prescription Drugs: On average people with disabilities spend more on prescription than the general public. When comparing retirement age Medicare beneficiaries with working age beneficiaries with disabilities, people with disabilities fill 40% more prescriptions and spend 50% more on prescription drugs. Medigap insurance for prescription needs is very expensive and is limited. Proposed Medicare prescription may have limited value to people with disabilities.
- Personal assistance services and long-term care: PAS is essential to health and independence. Consumer-directed PAS encourages personal autonomy, social-integration, productivity and overall well-being. The state-by-state, waiver-by-waiver approach to the development of PAS has resulted in a highly fragmented system of care.
Innovative managed care systems have some common elements, including partial or full financial risk; care coordination or care management; use of a physician extender, someone who is not a physician but a health care professional, like a nurse practitioner; more aggressive health monitoring; Medicaid sponsorship; and participation in RWJ grants. Examples of innovative programs are the Community Medical Alliance in Boston, the Wisconsin Partnership Program, and Axis in Minneapolis-St. Paul.
The Community Medical Alliance is organized to respond 24 hours a day, seven days a week; designed to have a personalized consumer relationship, empower people to allocate resources and integrate case management into care delivery. The program has specialized HMO functions including specialized networks, specialized benefits, specialized reimbursement models, and specialized management systems to implement primary care allocation
Telemedicine and e-health are new tools for consumers and practitioners. Information can be readily available about specific health conditions, health maintenance strategies, health providers and health plans. The methods work around transportation barriers and will expand as broadband technologies expand.
Research priorities
- Medical necessity
- Prevention and health maintenance
- Outcome and quality indicators at both the health plan and provider level
- Case-mix and risk adjustment-project person’s resource use based on their characteristics
- Post acute industry organization
- Effects of payment systems
- Characteristics of Medicaid eligible populations with severe physical disabilities
- They are clinically and socially very heterogeneous, some have been ‘wards of the state,’ while others were previously employed, but now unable to work due to a severe disability.
- Healthcare has been at the forefront of the thirty-year-old "Civil Rights" revolution
- There are real barriers and inadequate connections to primary care
- Medical care is provided through large impersonal fragmented, specialty clinics in teaching hospitals
- High prevalence of mental health issues
Registered nurse practitioner’s role in the physical disability program:
- Provides primary care in the office and at home
- Responds to new medical programs
- Provides health education and self-care teaching
- Authorizes all service with the primary care team
- Implements and monitors home based alternative services
- Coordinates medical and social services
Clinical eligibility criteria: The person needs to have one of the following physical disabilities so personal care attendant services or the equivalent care are needed to prevent institutionalization:
- Spinal Cord Injury with functional quadriplegia;
- Degenerative Neurologic Illness with functional quadriplegia;
- Severe Cerebral Palsy with severe spasticity;
- Traumatic Brain Injury with functional quadriplegia;
- Functional paraplegia with documented secondary complications.
- Personal Assistance: Fifteen years since Attending to America, the first national survey on personal assistance, was published, state PAS initiatives have expanded dramatically. The quality and quantity of national data have also improved. Funded research on PAS continues to focus primarily or exclusively on the elderly, despite clear evidence that PAS needs transcend age and disabilities. Research initiatives need to identify similarities and differences by age, condition, socioeconomic status, gender, race and ethnicity. Research priorities should include:
- PAS in the workplace: "Under what conditions is PAS a reasonable accommodation?" and "How can state or federal policies make it more reasonable for more employers?" Federal agencies could address different aspects of this issue.
- Independent living and peer counseling: Current research on "consumer-directed models" focuses on fiscal management, but the "Independent living model" was much broader, addressing service adequacy, availability and flexibility.
- Augmenting family support: The relevant policy question is how paid assistants can be used to augment and stabilize family support.
- Functional, economic and psychosocial outcomes: Additional work is needed on the impact of different types and levels of PAS over time
- The Olmstead decision and related legislation: Key questions should include: How are states operationally defining the "most-integrated setting?" How many adults are actually being moved out of nursing homes? What factors predict successful community placement?
- Cash and Counseling: The Cash and Counseling Demonstration and Evaluation (CCDE) project is a policy-driven study of a consumer-directed approach to personal services assistance services, funded by the Department of Health and Human Services and the Robert Wood Johnson Foundation. In this project, the consumers are given a cash allowance to hire whomever they choose for personal assistance services. They can also use their allowance to buy other services such as transportation, home modification or assistive devices. The project also offers counseling and bookkeeping services to help consumers manage their services. The project compares the cash allowance option with agency-delivered service. The three demonstration states, Arkansas, Florida, and New Jersey, offer the cash allowance to seniors and adults with disabilities. Arkansas and New Jersey cash out services from the Medicaid optional personal care benefit, while Florida includes services from the state’s Home and Community-Based Services waivers.
In the basic cash option:
- Consumers receive traditional assessment and care plan
- A dollar value is assigned to the care plan
- Consumer receive information to help them choose between managing an individualized budget or receiving traditional services
- Consumers who want a cash option are randomized into cash option or agency groups
- Cash option consumers receive counseling and bookkeeping supports
- Consumer and counselor develop a cash plan to meet consumer’s personal care needs
With a cash option model:
- Consumers may appoint a representative to help them manage the cash allowance
- Almost all cash option participants chose to use the bookkeeping services
- Consumers in the cash option may return to agency at any time
The project was evaluated on:
- Service utilization and preferences
- Quality of care
- Cost impact
- Health impact
The process was evaluated by:
- Documenting how Cash and Counseling was implemented
- Charting environmental factors that can explain program effects
- Recording counseling experience
Some evaluation reports from Arkansas are positive, indicating that cash allowance consumers are highly satisfied, they enjoyed greater well being and are more likely to get paid assistance than consumers in the traditional program, and they experienced no adverse health effects. For non-elderly consumers, help outside normal business hours, help with a range of services and equipment purchases increased, while unpaid and total hours of care decreased
Research Priorities:
- What are the characteristics of persons who succeed in a consumer-directed option? What supports are needed for others to succeed? How does this differ across disability groups?
- What are the experiences of severely ill consumers without family support in a consumer-directed option? What supports do they need to succeed in a community setting?
- What training will help consumers, representatives, and workers with a cash option? How does this differ across disability groups? For family and non-family workers?
- What approaches can help link workers and consumers who have no available worker?
- Can consumers with mental illness and substance abuse histories succeed in a cash option?
