PCPID Quarterly Meeting: September 26–27, 2011

Health Care/Medicaid

Core Values

• Disparities in access to appropriate, quality healthcare, including dental care, must be addressed for people with disabilities.
• Healthcare delivery systems must continue to move towards person-centered care that respects self-determination and choice.

Opportunities

1. Better training for medical professionals
   • Training of health care professionals especially for the adults with ID population
   • Collaborate with medical schools, universities and medical professional organizations to increase awareness of treating people with IDD within the entire medical community
   • Better access and training of medical and dental professionals in healthcare for ID and incentives to locate in rural underserved areas
   • Health care providers at all levels are trained to attend the PWIDD an ensure informed consent in all health care decisions
   • Professional schools should do more training in treating people with ID
   • Better training for medical professionals in all areas of practice so they are better equipped to work with individuals with IDD
   • Medical schools should do more training in the field of disabilities
   • Awareness and training of issues related to health should be implemented in training programs backed by mandate
2. Health care is person focused not money driven
   • Must not lose sight of importance of person centered services as attempts to cut costs
   • Require states to provide services that demonstrate a person centered focus with customized supports as a minimum
   • Ensure that health care is person focused not money driven
   • CMS must monitor state /waiver applications and state plan amendments to ensure that the health and long term care needs of PWIDD are addressed in a person-centered community based manner and choice
   • Individuals who are dual eligible shouldn’t have “to be managed” in a cost effective system that is not person centered and back to a medical model
   • Encourage money follows the person model
3. The ACA is fully implemented
   • As ACA is implemented monitor how features affect people with IDD and ensure that they have access to health care that they need
   • Recommendation ensure that the ACA is fully implemented so as to increase the accessibility of health care services, primary health care for people with ID
   • Ensure that the benchmark health exchange plan provides adequate coverage for DME therapeutic services and other services needed by people with ID
   • Implementation of the Affordable Care ACT should include full inclusion of individuals with IDD
   • People with ID need to have opportunity to have access to all care needed not the care that the individual state provides by their definition of services available
   • ACA includes PWIDD
   • Ensure essential benefit packages in insurance exchanges address the needs of people with ID
   • Fully implement the ACA
   • PCDID should provide advice/guidance to the President relative to developing credible policies and practices for people with IDD in implementation phase of ACA
4. The necessary information to make appropriate choices about their healthcare
   • The healthcare system is just too complicated for people with ID to understand it needs to be simplified
   • Local government must help families locate health care for family members with ID
   • Informed accessible support mechanisms to navigate health and benefits and eligibility requirements
   • Ensure people with ID (and their families)have the necessary information to make appropriate choices about their healthcare
5. Effective oversight of state plans
   • Federal government must exercise careful and effective oversight of state plans to ensure that individuals with IDD receive the services intended by the Affordable Care Act
   • Monitor impact upon PWIDD of changes to services for all eligible
6. Develop incentives for doctors such as forgiving med school loans if they have at least 50% of their clients w IDD for at least 5 years
7. Avoid the medicalization of IDD
   • Closely regulate managed care to avoid the medicalization of IDD and prevent profit motive from decreased services
   • The move to managed care around the country is not necessarily a good fit for the lives of people with ID. More demonstration that it works is necessary
   • Don’t allow managed care to negatively impact long term support services
8. Protect health care access for all/people do not lose their healthcare
   • As appropriate people with ID should not lose their Medicaid if they get employed
   • Maintain maintenance of effort to ensure people do not lose their healthcare
   • Maintain current health care Medicaid funding until 2014
9. The federal state system structure we have is broken. We cannot continue with band- aid fixes that create more inefficiencies
10. Access to preventive health services
    • People with ID who don’t have Medicare and cannot afford health care but need medical care should receive government aid for such care
    • Ensure access to preventive health services under ACA for people with IDD
    • People with IDD should have access to affordable healthcare under ACC
    • Individuals with IDD should have access to comprehensive coordinated covered health services
11. All Health services are accessible
    • Ensure that insurance companies that the general public can access provide equal opportunity and quality care for all
    • All Health services are accessible to PWIDD on an equal basis with others
12. Dental schools create forgiveness program to dentists who go into the field of disabilities
13. Healthcare for people with ID cannot be tied to full-time employment
14. People with ID that want technology is should be available and funded to improve health care
15. Emphasize the impact of Federal cuts on States, domino effect
16. Ensure that state and federal budget cuts do not affect health care services available for people with IDD

Risks

1. Not person centered
   • Movement to limited managed care options will halt and undo gains in better services geared to individuals needs
   • Managed care options are not person centered and accountable for needs of individuals with IDD
2. Rationing of services and more disenfranchised as a group
3. Healthcare premiums skyrocketed for all
4. Reduction of productivity for economy
5. Decrease in levels of payment
   • Medicaid cuts limit access to care and finical disincentives for serving individuals with IDD
   • Decrease in levels of payment reduces already scarce medical services
6. Families unable to pay for medical care
   • More dependent on family insurance and/or family care
   • Financial impacts on parents and siblings
   • Bankrupt families
   • Families unable to pay for medical care
   • Enormous strain on families and their budgets
7. Decrease in preventive care equates increase in illness
   • Cuts in wellness services will mar the view of Americas’ workers. This will impact the ability to attract global forms to the US
   • ID folks will not be willing to participate in prevention or follow-up examinations, x-rays etc.
   • Decrease in preventive care equates increase in illness
8. Decreased personal health
   • Poorer health outcomes lead to decrease life expectancy
   • Lives will be cut short as people are unable to receive adequate care
   • Prohibitive out of pocket costs expenses for families and individuals, no or postponed care, increased mortality
   • Decreased personal health
   • Short life span
   • People’s disabilities might get worse resulting in physical health or death
   • Health outcomes can lead to increased morbidity and mortality for individuals with IDD and their families
   • Limited health care services for PID and their families, cost will go up people will die
9. Emergency room usage will be greatly increased
   • Increased health care costs from poor health and emergency care result in higher costs for everyone
   • Reduction in available doctors emergency room usage will be greatly increased increasing overall med costs for all citizens
   • More visits to emergency room at hospitals and increase in cost dollars
   • Unhealthy and more disabled conditions will prevail, use of emergency room more frequent
   • Increased cost in emergency services, high costs substandard health care for people with ID
   • Losing health care ends up costing more because people use emergency rooms as primary care
   • Increased actual costs of health care, emergency acute and life-saving measures
   • Continued health dispensations PWIDD require more expensive care
10. Creating increased reliance in more costly institutional and nursing home care
11. If lose benefits people won’t be independent