PCPID Quarterly Meeting: September 26–27, 2011

Long Term Services and Supports/Community Living

Core Values

• We must continue pursuing and publicizing best practices of supporting people with intellectual disabilities as full and equal participants in society.
• People with intellectual disabilities have the right to be supported in living, learning, working, playing, and having meaningful, fulfilled, lives in the community, just as other citizens.
• Appropriate home and community-based living options for people with disabilities with a range of functional and support needs should be available nationwide.

Opportunities

1. Direct support professional
   • Build a real direct support professional net work to support community living wherever a person chooses to live
   • Programs/incentives to bring in caregivers
   • Skilled, well trained and well paid staff must be available to provide the supports needed
   • Develop new ways to provide social networks and home based coaches in community settings (using funds re-allocated from institutional and large group settings)
   • Address the issue of available qualified direct service providers better training and better compensation
   • Develop programs to create direct support professionals
2. Convert congregate settings to community-based
   • Ways to reduce or close large state institutions
   • Invest limited dollars wisely by closing state institutions promote federal policy to implement Olmstead reduce FFP for institutions
   • Provide incentives for service providers to convert congregate settings to community-based supported living options
   • Closing of institutions will enhance the fiscal bottom-line in supporting community based services
   • Encourage states to eliminate spending in large congregant institutions
   • Economic impact, reduce the growth curve by substituting community services for institutional services and strengthen families
3. Eliminate institutional bias in Medicaid
   • Remove the institutional bias in Medicaid funding
   • Eliminate institutional bias in Medicaid and create entitlement to community living in customized settings (person-centered planning)
   • Remove the institutional bias living
   • Eliminate the institutional bias with Medicaid and create an entitlement to community services
   • Medicaid should be reformed to eliminate the institutional bias and make HCBS more readily available to all who need them
4. Maximum flexibility to individuals and families
   • Give self advocates and families more control over services
   • Empower Americans to provide input into our own services, specifically for those in communities that transition from relying on family to move traditional support services start now before it becomes a necessity
   • Support and value family members w ID with a system that is person centered taking into consideration their own values and choice
   • Ways to increase direct support services
   • Long term services must be person-centered, giving self-advocates and families control
   • Adapt individualized budgeting systems to allow maximum flexibility to individuals and families in creating a system of support that best meets their needs
   • Ensure that long term supports are available to individuals and that supports are person- centered, support families and involve community
5. Public/private partnerships
   • Need to build public/private partnerships with families and others to help offset costs
   • Encourage and incent non-government entities such as faith-based and commercial businesses to partner in creating long term supports
   • Encourage public-private partnerships to grow housing opportunities
   • Proactive Planning, involve important stakeholders such as planning commissions, the association of Realtors, commerce associations and others to create win-win communities throughout US
6. Varied living arrangements
   • There should be a menu of choices for all types of community living, including neighborhood group homes and apartments
   • Many and varied living arrangements for those with ID/DD/PD must be available in every community
   • Maintain current living arrangements but increase ability to move according to individual choices
7. Incentives for creating smaller and more integrated community opportunities
   • Recommendation all persons with ID should have increased accessibility to long term community living
   • Recommendation long term community living is vital to ensure increased accessibility to people with ID relative to employment, health care, transportation, technology and education
   • Incentives for creating smaller and more integrated community opportunities
   • Recommendation community living for people with ID is a primary goal that must be ascertained so that their daily interaction will be on a level playing field with all citizens
8. Protect current community choices
   • Maintain Medicaid funding to ID
   • Protect community services protect current community choices as system evolves and changes provide choices
9. Tax exempt long term support savings accounts
   • Allow the creation of tax exempt long term support savings accounts where contributions are tax deductible, income support
   • Families with IDD should be able to save for the future of their son/daughters with IDD in like manner as available to families saving for college
10. Create long-term buy-in use all forms of media
    • Awareness and education for communities about people with ID/DD to be provided thru the media so all will be welcome in all communities
    • To create long-term buy-in use all forms of media, such as social networks sites, to highlight success stories, enlist private sector in this work
11. Maximum benefits with supports for best possible outcomes
    • Services and facilities for general population must be accessible to PWID
    • Long term services should not be based on managing risks (worst case scenario) but provide maximum benefits with supports for best possible outcomes
    • Remove regulations which restrict the creation of residential and other long-term support options
12. Create opportunities to contribute to community life and communities through volunteering, change the paradigm to being viewed as valuable contributors
13. A right to live just like typical citizens
    • People with ID should have access to appropriate home and community based services based on their individual needs and desires choice-access to life
    • People have a right to live just like typical citizens as part of a family and community
    • Programs and policies should be focused on supporting this right
    • Ensure that PWID have the opportunity to choose their place of residence and where and with whom they want to live on an equal basis with others and are not obligated to live in any particular arrangement
    • Ensure that PWID have access to a range of services and supports necessary to support living and inclusion in the community and that community services and facilities for the general population are available on equal basis with others
    • People with ID should have the right to live with supports in the community and home of their choice
14. Family supports include considering all members of the family equally— ie, person with ID/DD as well as parents and siblings
15. The Class Act
    • Support the class
    • Employers should be actively encouraged to make the class program available to employees
16. Access to community supports should not require years on a wait list
17. Help people get integrated jobs at competitive wages
    • People should get off Medicaid so they can have real jobs
    • Decrease the need for services by supporting government programs that help people get integrated jobs at competitive wages

Risk

1. Warehousing and homelessness
   • Budget cuts may lead to limited accessibility for community living (housing)
   • People living independently with fund support will not be able to keep their homes creating more homelessness
   • Increased institutionalization
   • Realizing the rights PWIDD under Olmstead is threatened by the lack of available community services
   • Return inhumane institutional (large scale) living conditions—personal decrease choice decrease self determination
   • Long term need for institutional care reversing Olmstead
   • Stated will return to warehousing people in institutions as parents/caregivers die or are no longer able to provide for loved ones
   • People with IDD will become homeless
   • No safety net back to institutions and or homelessness
   • Increases in homelessness
   • Institutions will be growing
2. Families will be torn apart as resources to support lived ones become scarce
   • Cuts in Medicaid funding will impact directly individuals with IDD and their families with limited care and adverse outcomes
   • Eliminating community housing opportunities for people with ID can limit options for family members
   • Families will be torn apart as resources to support lived ones become scarce
   • Progress made to date in supporting p w IDs to live in community is at risk—lack of support for families—caregiver burn out no/longer able to provide care
   • Increased pressure on families decrease health and decrease lifespan of family, members, inequitable burden on families, low respect/regard for people with ID, societal
   • People unnerved in families that became highly stressed unemployed economically effected
   • Family members could lose their jobs and also be on public benefits themselves, economic impact beyond disability
   • Increase in people living with family members and related family stress
3. People will not have choices
   • Eliminating options reduces an element of individual choice and self-sufficiency
   • ID people will not have choices to live as the rest of the population lives
   • People and families won’t get to have choices in the community
   • Individuals with IDD will have limited choices with budget driven options
4. Isolation
   • Eliminating housing causes isolation
   • Long term risk isolation
5. “Least expensive” options will be favored
   • The cost cutting efforts will lead to fewer choices for residence and supports and “least expensive” options will be favored without consideration of quality and appropriateness
   • Fund cuts will likely cut the most costs efficient supports and services, ex family supports, community housing options, home on your own
6. People with ID won’t have independence
   • The ID will not gain opportunities for being part of a free and open society
   • People with ID won’t have independence
7. Community programs will become mini institutions w horrible situations that we don’t want
8. People providing services to those needing community support will lose their jobs
9. Current wait lists to supports would be to nowhere
10. Increased financial drain on US economy, decreased productivity, increased health costs, increased individual care costs
11. The US design firms and businesses lose out in the global economy because they will not be able to export, among other things, architecture and planning services
12. Smaller communities will face burdens of unsupported citizens