2013 - 2014 Legislative Agenda Summary
The Arc, United Cerebral Palsy, AAIDD, ANCOR, AUCD, and NACDD are national organizations that serve and advocate for people with intellectual, developmental, and other disabilities. We work together to shape, expand, and protect a strong federal role that provides vital benefits, services and supports and assures civil rights for our constituency. While the United States is one of the wealthiest countries in the world, our nation is far from meeting the diverse needs of our constituents and their families, many of whom find their lives at stake as the federal role in disability policy is being addressed.
The 113th Congress faces numerous challenges. Continuing federal deficits, cuts in appropriations for discretionary programs, and numerous federal laws requiring expansion and modernization combine to put the system of disability benefits and supports at grave risk. This document presents the major areas needing attention for people with intellectual and developmental disabilities (I/DD) in this Congress.
Budget and Tax Policy
Determine the availability of federal social insurance (Social Security, Medicare), safety net (Medicaid, Supplemental Security Income (SSI)), and discretionary programs (such as housing, education, employment, transportation) that people with I/DD rely on for their health, safety, and wellbeing. Sufficient tax revenue must be raised in order to properly fund these programs.
Overwhelmingly the largest funding source of both acute health care and long term services and supports for people with I/DD. The program must be preserved and rebalanced to make home and community based services the norm and institutional services the exception.
Long Term Services & Supports
Critical for people with I/DD who frequently have lifelong needs for assistance with activities of daily living, such as getting dressed, taking medication, and preparing meals. These services must be widely accessible, consumer controlled, and provided in the community without the requirement that people impoverish themselves.
The cornerstone for community living for most adults with I/DD who are able and willing to engage in meaningful work. Integrated employment programs, including supported employment, must be properly funded and administered to provide job development and placement, skills training, job coaching, and other services necessary to help find and maintain employment.
Critical for most people with I/DD to live in the community. There must be an adequate supply of safe, accessible, and affordable supportive housing.
Essential for caregivers, especially those who are aging, who provide care in the community. Counseling, support groups, respite, training, cash assistance, and information and referral must be made widely available to family caregivers.
The gateway to achieving full potential and independence for people with I/DD. The education system must have high expectations, offer integrated instruction by highly qualified teachers, require appropriate assessments, and use only positive behavioral supports to address problem behaviors.
Social Security & Supplemental Security Income (SSI)
The primary income sources for many people with significant disabilities to meet their basic needs for food, shelter, and clothing. Benefits and eligibility must be maintained and the long-term financial future of these programs must be considered outside of budget reduction efforts.
The pathway to employment, health care, recreation, and other aspects of community living for people with I/DD. Accessible transportation programs must be properly funded and administered and anti-discrimination policies in transportation must be enforced.
Instrumental in making communication, education, independent living, and employment opportunities available for people with I/DD. Technology must be customized and made widely available to persons who may benefit from it.
The foundation for the services and protections that people with I/DD enjoy today. Civil rights must be preserved through vigilant enforcement of laws and regulations as well as strong opposition to efforts to limit the rights of people with I/DD.
Critical for people with I/DD to improve and maintain health and functioning. Health care systems must be accountable for providing timely access to high quality, comprehensive, accessible, affordable, and appropriate services that meet individual needs.
Direct Support Professionals
Constitute the backbone for community living for people with disabilities. A well-trained, adequately compensated direct support workforce is essential to providing the necessary supports and services to our constituents, where they live and work.