Supporting a sibling with disabilities can take many forms, and their needs vary across the lifespan, but to be most effective it is important to have the most current information about available services, laws, and policies. This article will cover some of the policy areas that siblings of people with IDD should be aware of as they grow to become the best support they can be to their brother or sister.
Many programs that support people with disabilities, including Social Security and Medicaid, have strict income and asset limits (how much money someone makes or saves) making it difficult for some to work and save for future expenses. ABLE accounts can be useful tools for individuals with intellectual and developmental disabilities (IDD) to save money without impacting eligibility for benefits. The Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act, signed in 2014, established the federal accounts, which are run by participating states. Participants can choose a program in their own state, or a program in another state, if it accepts out-of-state participants. The money in these accounts will not affect eligibility for federal benefits programs like Supplemental Security Income (SSI), Medicaid, and other important supports. ABLE accounts are different from Special Needs Trusts , which require attorneys to create, and have stricter rules about money coming in and out of the trust. ABLE account funds can be spent on any qualified disability expense.
When a person turns 18 they become a legal adult, with full rights and responsibilities. Putting an adult under a guardianship is the removal of their right to make decisions for themselves. School districts, physicians, and others often guide families of people with disabilities towards guardianship without discussing alternatives or the true implications of what putting someone under a guardianship means. Solely having a disability does not mean that someone needs a guardian, and individuals and families are advised to carefully consider the serious restrictions that come with guardianship. Often, it should be the last option after considering all the alternatives.
Keeping up with all the public policy issues can feel overwhelming. The Arc can help.
While some people with disabilities may need guardianship after reviewing alternatives, it is important to remember that less-restrictive options are available. All people, with or without disabilities, use a variety of formal and informal supports when we make decisions in our lives. The main alternative to guardianship is called Supported Decision-Making, which involves a legally-enforceable Supported Decision-Making Agreement. This document varies by state, but includes a list of supporters that the individual selects to assist with decisions and the types of decisions that the agreement covers. Other less-restrictive alternatives to guardianship include tools available to everyone, such as powers of attorney for medical and financial decisions.
Many siblings aren’t familiar with the programs that fund the supports and services that our siblings with disabilities need. Job coaches, residential supports, or day supports, are all considered Long-Term Services and Supports (LTSS) and are funded through Medicaid. Medicaid is a state and federal partnership, with funds coming from both state and the federal budgets. Medicaid spending is often a target for cuts, because it makes up such a large part of state and federal budgets.
On the policy level, we have to talk to state and federal legislators about the fact that the federal Medicaid law needs modernization, not cuts. Right now, funding for services in institutions, nursing homes, and other more segregated settings are mandatory, while home and community-based services (HCBS) are optional under the law. Until both institutional services and HCBS are both mandatory, there is an institutional bias in the Medicaid program. Making HCBS mandatory would eliminate waiting lists for services and would most likely result in the closing of institutions that are more costly, and unnecessarily segregate people with disabilities from the community. Until that change occurs HCBS are at risk, due to their optional status under the federal law; they are far more at risk to be cut when budgets are created, despite longstanding, bipartisan support of these programs. We will need a swell of support from inside and outside of the disability community to make HCBS mandatory, so it’s important to share your story with family, friends, and legislators.
Historically, the majority of people with IDD have been either unemployed or underemployed, despite their ability and desire to work in the community. The Workforce Innovation and Opportunity Act (WIOA) requires that states provide supports for individuals to receive competitive integrated employment, meaning integrated jobs paid at a fair wage. We know that people with IDD can be employed and thrive working in the community. People with disabilities should be supported to make informed choices about where to work and career opportunities, and have the resources to be successful in community-based employment.
Barriers to employment include, first and foremost, low societal expectations and a lack of general public understanding of all that people with disabilities are capable of. In addition, the strict income and asset limits of Medicaid make people fear losing vital public benefits if they work too many hours or earn too much. Lack of other services like transportation or of accommodations like assistive technology can also hinder success.
The federal Family and Medical Leave Act provides 12 weeks of job protection for some employees, including siblings, but it is not paid. Paid family and medical leave would boost economic security and opportunity for everyone, including the roughly 1 in 5 Americans with disabilities and their families. Siblings may need to take leave to care for their sibling with IDD or care for a parent who is the primary caregiver for their sibling with disabilities. As Federal paid leave policies come forward, it is imperative that the role of siblings is recognized.
Respite care provides short-term relief for families who are taking care of family members with disabilities. Respite care can be provided for a few hours, a day, a weekend, or sometimes longer. Respite care is not a substitute for ongoing care, school, alternative child care, adult day care, or any other funded program, however. The Lifespan Respite Care Program was authorized by Congress in 2006 under Title XXIX of the Public Health Service Act (42 U.S.C 201) and was just reauthorized this year, providing federal funds to states to support state-level respite programs.
People with IDD often need some extra support to be a part of their community. The help can include supports in personal care, communication, household tasks, building relationships, and navigating the community. The work that Direct Support Professionals (DSPs) do is invaluable to the disability community and the service system that relies on their abilities to keep people out of more costly, restrictive, and often segregated institutional settings.
There has been a lack of federal investment in direct support for decades and states have not picked up the slack. The rates service providers receive to ultimately pay DSPs do not take into account the wages of competing occupations, the need for benefits, and the actual costs of services. What has resulted are rates and therefore wages that have been flat for decades, without even cost of living increases. The word “crisis” doesn’t really do it justice - having a skilled, properly trained and fairly paid workforce is the lynchpin for success for so many people with disabilities to live the independent life that they choose.
Keeping up with all of the public policy issues that directly affect or are of interest to siblings of individuals with IDD can feel overwhelming. Groups such as The Arc of the United States can help, however, providing updated information on active legislation before Congress, as well as background and resources on a broad array of policy issues.