Prepared in Collaboration with the Sibling Leadership Network
Cathy Allen, John Kramer, Emily Marino, Shea Obremski, Anna Zendell
For the Policy and Advocacy Work Group
The purpose of this White Paper is to provide a summary of principles and recommendations to guide the advocacy efforts for and by the siblings of individuals with developmental disabilities. In a time of increasing fiscal constraint on federal, state, and local government, policymakers are looking to other avenues to buttress the support of people with disabilities. The brothers and sisters of people with disabilities are a key constituency of interested and essential allies and resources for agencies and policymakers in the movement toward full inclusion and participation of all individuals with disabilities. This White Paper emanates from the Policy and Advocacy Work Group at the Sibling Leadership Network Conference held in Washington D.C. on November 9 and 10, 2007. The Policy and Advocacy Work Group developed principles that should guide advocacy initiatives and proposed recommendations and action steps for including siblings in future policymaking.
Principles Guiding Policy and Advocacy
- The term “family” should include siblings. Federal law generally allows states to define “family” as they interpret various statutory provisions. But where a state defines family as “parents and guardians,” or fails to define family at all, brothers and sisters are left without an opportunity to participate in planning and care.
- Siblings have a unique and under-represented voice in advocacy for and with their brothers and sisters with disabilities. The sibling relationship is considered the longest-lasting relationships of the human experience, providing the greatest opportunity for reciprocal support and care. Adequate representation of brothers and sister in the lives of people with disabilities can lead to more balance in regards to independent living, personal freedom and self-sufficiency.
- Policymakers and agencies must incorporate siblings into the collective discussion of the rights and supports of citizens with disabilities. Including siblings will enhance the quality of life of individuals with disabilities and ensure quality services, support and long-term care for people with disabilities
- Siblings should be included in policy development, programmatic planning, services and supports. While many state and local regulations require family representation on policymaking boards and committees, parents have consistently been the identified family representatives. With the aging of American society, it is prudent to start investing in the next generation – siblings. Many siblings are already providing support with little or no input in shaping public policy, services or supports.
- Family support policy must enhance the quality of life of all family members. The focus of federally funded family support is the child with the disability and their parents. The current policy omits brothers and sisters who can also benefit from an enhanced quality of life. We believe it is time to strengthen family support policy by explicitly including brothers and sisters of people with disabilities in federal family support program guidelines.
- There are millions of siblings who are an untapped resource who can, with the proper support and encouragement, make a positive impact in the lives of their brothers and sisters and others with disabilities. When given the opportunity to meet other brothers and sisters of individuals with disabilities, people often note their sense of comfort and relief to know they are not alone. With support and information, an increasing number of brothers and sisters are capable and willing to play significant roles in the lives of people with disabilities.
Summary of Advocacy to Date
Services and policies concerning individuals with developmental disabilities have evolved over the past five decades. Today people with disabilities who were once relegated to isolated institutions, deprived in many cases of basic human rights, are provided with the supports and resources to live independent, productive and fulfilling lives in their communities. The social revolution that enabled this transition was led by concerned professionals, courageous legislators, loving family members and determined self-advocates.
The concerns of brothers and sisters of people with disabilities, and their desire to become a positive component of the future planning solution, represent a new era in the collective story of the civil rights of people with disabilities in the United States. The Sibling Leadership Network is dedicated to working with legislators and service providers in order to carry on the legacy of the professionals, family members and self-advocates who revolutionized the field to ensure that our brothers and sisters with disabilities continue to have opportunities to lead lives of independence, dignity, love and joy.
Prior to the Sibling Leadership Network Conference held in Washington D.C., a group of brothers and sisters from Ohio visited their United States Senator, Sherrod Brown. Under the leadership of Dr. Tom Fish of the Nisonger Center at The Ohio State University, the group educated their senator on the SLN’s goal of developing a national policy agenda, and of Ohio’s tradition of leadership in sibling advocacy. A member of the Senate Health, Education, Labor and Pensions (HELP) committee, Senator Brown is positioned to champion the cause of people with disabilities and their families.
The group also paid a courtesy call to U.S. Senator Edward M. Kennedy from Massachusetts, the youngest brother of Rosemary Kennedy, a woman with developmental disabilities. Senator Kennedy, who chairs the Senate HELP Committee, and his staff greeted the SLN representatives warmly and listened empathetically to their discussion of the unique situation of siblings. With encouragement and support, they discussed the upcoming reauthorization of the Developmental Disabilities Assistance and Bill of Rights Act (DD Act), which establishes and funds the Councils on Developmental Disabilities, University Centers for Excellence in Developmental Disabilities, and Protection and Advocacy Systems in all U.S. states and territories.
Key Policy Recommendations
Cutting-edge policy development and implementation provide critical mechanisms to move forward in promoting opportunities for the full inclusion and participation of persons with developmental disabilities in society, while concurrently supporting the unique needs and roles of siblings within their families. The Sibling Leadership Network is committed to partnering with policy-makers in order to provide a sibling perspective in formulating policies that will benefit people with disabilities and the families who provide support and care. The primary focus of initial SLN advocacy efforts is the Developmental Disabilities Act.
Developmental Disabilities Assistance and Bill of Rights Act (DD Act)
The DD Act is scheduled for reauthorization this year. This Act ensures that individuals with developmental disabilities and their families participate in the design of and have access to culturally competent services, supports and opportunities that promote the full inclusion and participation of citizens with disabilities. The SLN has identified this Act as a primary focus for implementing change because of its importance in the lives of individuals with disabilities and their families. The SLN finds that the DD Act is largely written in such a way that family members are referred to equally, without favoritism to parents. The expression “individuals with developmental disabilities and their families” is used fairly consistently throughout the act. In order to ensure that siblings and other caregivers are legally included in the process of planning for services and supports, the SLN proposes the following modifications of the language in the Act itself.
- The Sibling Leadership Network recommends redefining “family” as follows: “the term ‘family’ means, mother, father, brother, sister, spouse, child, and anyone else that an individual with a disability considers family.”
- The Sibling Leadership Network recommends the inclusion of all types of family members as representatives on state Councils on Developmental Disabilities. We specifically request one seat be occupied by a sibling representative.
- The Sibling Leadership Network recommends several changes in the Council on Developmental Disabilities State Plans. First, the language should include brothers and sisters. Second, incentives should be provided for University Centers for Excellence in Developmental Disabilities to specifically include siblings in the demonstration grant development process and/or submissions. Third, State Protection and Advocacy Systems include siblings in its Board of Directors or Advisory Panel. Last, the outcome indicators must measure the involvement of siblings when evaluating the participation of families.
- The Sibling Leadership Network recommends specific efforts to reach out to, inform, and involve brothers and sisters in training opportunities and programmatic activities.
- The Sibling Leadership Network recommends enhancing outreach, information, and involvement of siblings of people with developmental disabilities in the creation and development of projects of national significance.
The SLN also strongly supports the following legislation and proposed amendments, in alliance with groups of self-advocates and other disability organizations across the country.
Lifespan Respite Care Act (P.L. 109-442)
The Lifespan Respite Care Act provides competitive grants to states to develop coordinated systems of quality, community-based respite services for family caregivers of children and adults with special needs regardless of age and disability. The Sibling Leadership Network supports the Consortium for Citizens with Disabilities (CCD) Long-Term Services and Support Task Force in urging full funding ($53.3 million) for the Lifespan Respite Care program in the FY09 Labor, HHS, and Education funding bill. In addition, the SLN proposes the inclusion of siblings in family trainings about respite care; access to information about available services and supports; respite worker and volunteer training and recruitment; and the development of specialized training to support siblings as new caregivers in times of transition.
Financial Security Accounts for Individuals with Disabilities (H.R. 2370/S.2743)
Financial Security Accounts for Individuals with Disabilities (FSAID) H.R. is new federal legislation introduced in both the House (H.R. 2370) and the Senate (S.2743). The legislation proposes providing individuals with disabilities and their families a means to save money and build assets on behalf of people with disabilities without jeopardizing their entitlement to crucial federal, state, and local programs that enable them to pursue their goals and dreams. Specifically, the FSAID allows people with disabilities, any family member or guardian to establish a Financial Security Account, a savings account specifically for persons with disabilities, which would accrue interest tax-free. Funds from this account could be used for various expenses not covered by traditional government benefit programs, such as medical care, education, vocational training, assistive technology, housing, relocation, and transportation. All FSAIDs would be federal accounts. If this legislation is passed, the regulations overseeing FSAIDs will be consistent in every state. These accounts are not treated as income or assets when determining eligibility for benefits to any federal entitlement program.
The Community Choice Act (H.R. 1621 and S799)
The Community Choice Act was included in the Affordable Care Act as the Community First State Plan Option. In preparation for implementation of this legislation the federal government is inviting public comments about how to implement the measure. Here is the request for public comment: http://edocket.access.gpo.gov/2011/pdf/2011-3946.pdf as published in the Federal Register. For background information to assist in drafting comments, here are a few resources which highlight the key features of this Option for States:
a. Families USA: http://www.familiesusa.org/issues/long-term-services/health-reform/community-first-choice-option.html
b. National Resource Center on Participant-Directed Services: http://www.aucd.org/docs/Community%20First%20Choice%20Option.pdf
c. The Arc and UCP Disability Policy Collaboration published content for the “Pass the Commmunity First Choice Option” website (a straight-forward Q & A webpage about this option): http://sites.google.com/site/passthecommunitychoiceactsite/Home/cfc-option
Feedback can be received electronically, by regular mail, via express or overnight mail, or through hand delivery or courier service. Details on how to submit through any of these methods can be found in the Federal Register. It is important to respond promptly as the deadline for submission is 5 p.m. on April 26, 2011.
In addition, state sibling chapters and individual members of siblings groups are encouraged to contact their state developmental disabilities service agency urging their state’s agency to exercise this option. It is anticipated that states will be able to formally apply for this option in October 2011.
Family Medical Leave Expansion Act (H.R. 1369)
The Family Medical Leave Expansion Act (FMLEA) supports family members through local and state projects that support wage replacement for family members responding to caregiver needs. The SLN proposes inclusion of siblings caring for a brother or sister with a disability in the FMLEA provisions. This included group should receive the wage replacement benefits in the same way as parents and other defined beneficiaries, as well as the entitlement to “school” involvement leave. Siblings should have increased access to training that enables them to provide necessary care for a brother or sister with a disability, without jeopardy to employment. To this end, sibling language should be added to the benefit of “meaningful involvement in training.” Provisions for the inclusion of non-parental family caregivers should be added in policy evaluation initiatives proposed in the FMLEA to develop an evidence base of this benefit.
Services and policies concerning individuals with developmental disabilities have evolved over the past five decades. We have moved together as a society that relegated people with disabilities to isolated institutions, deprived in many cases of basic human rights, to one in which, today people with disabilities are provided with the supports and resources to live independent, productive and fulfilling lives in their communities. The social revolution that enabled this transition was led by concerned professionals, courageous legislators and, most of all, by determined and loving parents. The Sibling Leadership Network is dedicated to working with legislators and service providers in order to carry on the legacy of our parents to ensure that our brothers and sisters with disabilities continue to have opportunities to lead lives of independence, dignity, love and joy.