This month millions of students are headed back to school to complete another academic year. Do you know your rights at school as a parent and self-advocate? Take a look at these practical tips for managing the educational landscape to effectively advocate for your rights or the rights of a family member living with autism in the classroom.
ROCKVILLE, Md. — Ever since she was 4, when a caregiver force-fed her with a spoon, Caroline Munro has not let anyone feed her but her mother.
The 22-year-old has cerebral palsy and an intellectual disability. She doesn’t speak and functions at a preschool level. Her mother, Beth Munro, feeds her with a fork or her hand.
As Beth ages — she’ll be 68 in October — she wonders who will care for Caroline when she’s no longer around. But she may never know. Caroline is on a Maryland waiting list for additional Medicaid services for the disabled. The list is thousands of names long, and as in many states, names often stay on it until a caregiver falls ill or dies.
About 860,000 people over 60 nationwide are in Beth’s place, caring for someone with intellectual or developmental disabilities in their home. And many are waiting, sometimes for years, for state-provided Medicaid help for their disabled child, sister or brother, such as placement in a group home, day services, or transportation or employment programs. If they can’t afford to pay for these services on their own, under the federal-state Medicaid system, their relative could end up in an institution.
As the number of older caregivers grows, and their need for help becomes more dire, a few states have passed laws to give older caregivers a chance to help decide where, and how, the person they care for will live. Tennessee passed a law in 2015 to ensure that anyone with an intellectual disability and a caregiver over 80 got the services they needed, and this year the state expanded the law to those with caretakers over 75. And in 2014, Connecticut passed a similar law that is helping about 120 people with a caregiver over 70.
But the waiting lists for needed services in these states and many others are still thousands of names long. In recent years, states such as Maryland, Virginia and Pennsylvania have put money into their budgets to try to chip away at the lists, and they get federal matching dollars to help pay for it. Some states are prioritizing people with urgent needs, while others are prioritizing students as they age out of school.
Yet advocates for people with disabilities, such as Nicole Jorwic, director of rights policy at The Arc, a national nonprofit, say there needs to be a federal fix.
“Something that pumps money into the system,” Jorwic said. “And that’s just not going to happen in the current climate in Congress.”
In Maryland, Beth Munro realizes that unless she becomes seriously ill or dies, her daughter might not be placed in a group home.
“I’ve worked really hard at the issue over the years,” Beth said, “and you get nowhere.”
First generationThis generation of caregivers over 60 watched over decades as the U.S. grew more understanding and inclusive of people with disabilities. A movement swept the country in the 1970s and ’80s to deinstitutionalize people with disabilities. And for decades now, most people with disabilities who receive Medicaid help have been cared for at home by family members.
In 2013, spending for community- and home-based services surpassed spending for large institutions, such as mental hospitals and nursing homes, for the first time. By that time, 14 states no longer had any large state-run institutions for people with intellectual or developmental disabilities, and many others had only a few, according to University of Colorado research.
The move to deinstitutionalize care has provided care that is more personalized while also saving states money. Average costs for care in a state-run institution, in 2013, ranged from about $129,000 a year in Arizona to about $603,000 in New York, while the average state costs of community-based services nationally is $43,000, according to the University of Colorado.
What this has left, though, is fewer residential options, and lengthening waiting lists. About 198,000 people were waiting for home- or community-based services in the 34 states that reported data in 2013, according to University of Minnesota research. The longest waiting lists were in Ohio (41,500), Illinois (23,000) and Florida (22,400).
Some states don’t keep waiting lists. In California, people with intellectual or developmental disabilities qualify for the services they need under a state-run health system. This means they should be getting the services they need.
But April Lopez, chairwoman of California’s State Council on Developmental Disabilities, said that’s not always the case there. Some services aren’t available when you need them, she said. The state’s reimbursement rate is so low, she said, it discourages doctors and health centers from providing services.
If states aren’t able to provide services for everyone, they should focus on providing more support for family caregivers, such as high-quality case management and respite services, said Susan Parish, director of the Lurie Institute for Disability Policy at Brandeis University in Massachusetts.
With medical, technological and public health advances, people with disabilities are living longer than before, Parish said. And with family size shrinking over the years, fewer siblings are around to assume care of their brother or sister as their parents age.
Caregivers need help transitioning out of their role — finding the person with disabilities a place to live, money, benefits and a new guardian, Parish said.
“I’ve worked with several parents who said they’ve hoped their son or daughter would die before they did because they don’t feel there are supports out there,” she said.
Some steps in some statesBeth Munro said she has felt that way, at times. She said she has been caring for Caroline on her own since she was 9 months old. Caroline has a brother and sister, but they live out of state and Beth doesn’t want them to have to take over her role. Caroline’s cerebral palsy affects both of her arms and legs. She is dependent for all of her care and can’t be left alone.
But her laugh is full of life, and she laughs often. Her mother says she is generally a happy person. She is in a day program with other adults with disabilities, and they often go out into the community, like to a nature center or to the movies.
Under Maryland law, people with intellectual or developmental disabilities who are transitioning out of the school system at age 21 receive some services. Yet 7,600 people on the waiting list in Maryland either have no services or need more.
Last year, Gov. Larry Hogan, a Republican, added $3 million to the budget, which served about 120 people who were deemed to be in crisis, and added $3.5 million this year for the same purpose.
This has been a bright spot in a decadeslong fight by the Maryland affiliate of The Arc to educate people and get more funding, said Cristine Marchand, its executive director.
In the past, the organization would suggest a new tax in the state to cover the expenses — a tax on snacks or telecommunications — and each time the governor at the time would take the money and use it for something else, Marchand said.
Whether a state makes progress addressing the issue has less to do with the political party in power and more to do with how much officials know about the issue, or how much influence advocates have, said Bernard Simons, Maryland’s deputy secretary for developmental disabilities.
Simons has worked in similar jobs in five other states and he said it’s the same wherever he goes — parents dying or getting sick, and children left with no plan in place.
States, including Maryland, need to be planning more, he said, instead of just reacting to emergencies.
In Pennsylvania, which has one of the largest waiting lists — about 13,800 people — Republican state Rep. Thomas Murt said he has several bills pending in the Legislature that would collect money specifically to provide services for the people on the list using different taxes, including on natural gas, tobacco, and vaping.
Like Maryland, Pennsylvania provides services for students transitioning out of school — about 700 a year. But sometimes it takes an older caregiver falling ill to get help, Murt said. “If another state is doing a better job, I think we should take a look at what they’re doing.”
Courts have ordered some states to provide more community-based services.
Virginia is making big changes to how it serves people with disabilities because of a 2011 settlement with the U.S. Department of Justice, which found that the state was needlessly keeping people in institutions and failing to provide enough community-based alternatives.
The state agreed to close down four of its five large institutions and serve 4,170 new people with community-based supports by 2021.
Helping elderly caregivers firstIn Tennessee, The Arc Tennessee, an affiliate of the national group, pushed the Legislature to help older caregivers.
And, because these people have gone without the state’s help for so long, the Legislature wanted to help, said state Rep. Bob Ramsey, a Republican who advocated for the state’s new law.
“I felt it really appropriate for us to do something to give them some relief and some assurance that they weren’t going to have children, loved ones or friends that were assigned to institutions,” Ramsey said.
About 6,000 people are on the state’s waiting list, but that’s only people with intellectual disabilities. Before this year, a person with a developmental disability but not an intellectual disability did not qualify for services. But the state is making changes. As of July 1, people with intellectual or developmental disabilities qualify for services under the state-run health system, as they do in California.
The state plans to provide new home- or community-based services to 1,700 people — compared to the 100 or 200 people it has been helping in recent years — on the waiting list this budget year, according to a spokeswoman, Sarah Tanksley.
Hope for an ‘active life’In Maryland, Beth Munro has struggled for years to care for her daughter on her own. She said it’s tough to find the strength to lift her daughter in and out of the bathtub every night.
But later this month, she’ll be getting extra help. The state just approved 35 hours of in-home services for her, including for bath time.
Still, she hopes her daughter can move into a group home soon, so she can start to learn to live without her mother and do the kinds of things she likes, such as sewing, taking photos and dancing in her wheelchair — with help from others.
“That’s the main thing,” Beth said. “Not only that she’s well taken care of, but that she has an active life, doing things that she likes to do.”
This story was produced by Stateline, an initiative of The Pew Charitable Trusts. View theoriginal report.
The number of potential voters with disabilities is on the rise and now exceeds that of either African-Americans or Latinos in this country, according to a new report.
Some 35.4 million people with disabilities are expected to be eligible to vote in the presidential election this November. That’s an increase of 7 percent over 2012 and represents nearly one-sixth of the total U.S. electorate.
The findings come from a report released this month from the Rutgers School of Management and Labor Relations which is based on data from the U.S. Census Bureau’s American Community Survey and population projections.
“People with disabilities are often overlooked in elections, but they are one of the largest minority groups in the United States,” said Lisa Schur, a co-author of the report. “They often receive messages from society that they are not welcome or expected to participate, but their votes can sway election outcomes.”
As their numbers increase, voters with disabilities can edge out other demographic groups that traditionally receive more attention, the report found. African-Americans are expected to account for 28.7 million eligible voters while Latinos represent 29.5 million.
Meanwhile, the influence of people with disabilities rises even more when those who live in their households are also factored, bringing the potential number of eligible voters impacted by disability to 62.7 million.
Office of Special Education and Rehabilitative Services (OSERS) advised educators to provide more behavioral supports for students requiring disciplinary action. In a Dear Colleague letter sent to education leaders, OSERS warned schools to promote positive behavioral interventions for students in need of support. The Autism Society recognizes the importance of a healthy learning environment for all students with disabilities and strongly discourages disciplinary removal, regardless of duration, from academic settings. Students have a right to access a quality education and to feel supported in school at all times.
The Department of Justice (DOJ) issued new guidance on the scope in which individuals are covered under the Americans with Disabilities Act (ADA). The updated rules lessen restrictions on what constitutes a disability and clarifies legal protections afforded to those living with a disability and their rights under the ADA. The new regulations take effect October 2016.
After understanding their immense value to those affected by autism, we are pleased to announce HICKIES - the no-tie shoelace replacement - as our newest Business Supporter. Together we have launched a donation campaign to aid in the education, development, and support of those affected by autism. In order to take part and receive a 20% discount on your purchase, please visit www.hickies.com and enter coupon code AWARENESS at checkout. HICKIES will donate 25% to the Autism Society for all purchases made on www.hickies.com using the code AWARENESS.
Also, please be sure to check out the HICKIES autism campaign video. It's pretty cool!
The Autism Society wants to congratulate the State of Nebraska for launching the ENABLE program. ENABLE is a national program, offering enrollment to qualified individuals with disabilities both in Nebraska and throughout the country. ENABLE allows qualified individuals with disabilities to save up to $14,000 a year in an ABLE account without jeopardizing their eligibility for federally-funded, means-tested benefits, such as Social Security and Medicaid. The funds in the account can be used for disability-related expenses that assist the beneficiary in increasing and/or maintaining his or her health, independence or quality of life.Millions of individuals with disabilities and their families are often relegated to a life of poverty as a result of not being allowed to build even the most modest levels of resources. Individuals receiving supports through Social Security, Medicaid and other publicly-funded programs are often disqualified from those supports if they have more than $2,000 worth of resources or assets. Now, with the launch of nationwide ABLE programs, individuals with disabilities and their families will be able to better secure their financial futures and help offset the often significant financial challenges that can accompany living with a disability.
For more information on ENABLE and how to enroll, please visit http://enablesavings.com.
For more information related to ABLE programs and accounts in general, and for the latest news regarding other state programs, please visit the ABLE National Resource Center at www.ablenrc.org.
Disabled people have significant protections when they rent living space. First, when you are seeking a rental, landlords are not allowed to ask whether you have a disability or illness, or ask to see your medical records. After moving in, your landlord may have to provide you with accommodations, at the landlord's expense, and your landlord may have to allow you to make reasonable modifications to your living unit at your own expense.
Who Is Considered Disabled?The federal Fair Housing Act and Fair Housing Amendments Act (42 U.S. Code §§ 3601-3619, 3631) prohibit discrimination against people who:
The policy behind this rule is simple: No matter how well-intentioned, the landlord cannot make decisions about where and how you will live on the property that he would not make were you not disabled. For example, if there are two units for rent -- one on the ground floor and one three stories up -- the landlord must show both units to an applicant who uses a wheelchair, however reasonable he thinks it would be for the person to consider only the ground floor unit.
Mental or Emotional ImpairmentsIf you had, or have mental or emotional impairments that make you disabled, or if you appear to have them, you must be evaluated by the landlord on the basis of your financial stability and history as a tenant, not on the basis of your mental health. A landlord may reject you only if he can point to specific instances of past behavior that would make you dangerous to others (such as information from a previous landlord that you repeatedly threatened or assaulted other residents). If you cannot meet the good-tenant criteria that the landlord applies to all applicants (such as a minimum rent-to-income ratio), you may be rejected on that basis, though landlords must consider a proffered cosigner if you are otherwise qualified for the rental but for your income.
Disabled Tenants' Right to Accommodations by the LandlordLandlords must accommodate the needs of disabled tenants, within reason, at the landlord's own expense (42 U.S.C. § 3604(f)(3)(B)). As a disabled tenant, you may expect your landlord to reasonably adjust rules, procedures, or services in order to give you an equal opportunity to use and enjoy your dwelling unit or a common space. Accommodations can include such things as parking: If the landlord provides parking in the first place, providing a close-in, spacious parking space would be an accommodation for a tenant who uses a wheelchair.
Does your landlord's duty to accommodate disabled tenants mean that you can expect every rule and procedure to be changed at your request? No. Although landlords are expected to accommodate "reasonable" requests, they need not undertake changes that would seriously impair their ability to run their business. For example, if an applicant who uses crutches prefers the third-story apartment in a walk-up building to the one on the ground floor, the landlord does not have to rip the building apart to install an elevator. That expense would be unreasonable.
Disabled Tenants' Right to Make ModificationsLandlords must allow disabled tenants to make reasonable modifications to their living unit or common areas at their expense, if needed for the person to comfortably and safely live in the unit. (42 U.S.C. § 3604(f)(3)(A).) You have the right to modify your living space to the extent necessary to make the space safe and comfortable, as long as the modifications will not make the unit unacceptable to the next tenant, or if you agree and are financially able to undo the modification when you leave.
Examples of modifications undertaken by a disabled tenant include:
Proof of Need for Accommodation or ModificationLandlords are entitled to ask for proof that the accommodation or modification you have requested will address your needs. For some disabilities -- for example, installing a ramp to accommodate a wheelchair -- the solutions are obvious. But other disabilities, especially mental ones, are not obvious, and their accommodation isn't either -- for example, removing doors to accommodate a person who is fearful of closed spaces. Without some proof, your landlord has no way of knowing whether your request is legitimate or a ruse to obtain special treatment.
If you want a specific accommodation or modification and your disability is not obvious (or if you anticipate an argument with your landlord regarding the necessity of what you have proposed), have your proof ready before you make your request. Ask your physician or therapist for a letter attesting that you need what are asking for and that it will meet your needs. To protect your privacy, carefully explain to the physician or other writer that he need not explain the disability; he need only certify that the changes you would like are appropriate to your situation.
For all the legal and practical information you need to protect your rights as a renter, no matter what state you live in, get Every Tenant's Legal Guide, by Marcia Stewart and Janet Portman (Nolo).
June 14, 2016
The ABLE National Resource Center is excited to congratulate the State of Tennessee on the launch of the country’s second ABLE program. ABLE TN is a national program, offering enrollment to qualified individuals with disabilities both in Tennessee and throughout the country.
ABLE TN allows qualified individuals with disabilities to save up to $14,000 a year in an ABLE account without jeopardizing their eligibility for federally-funded means tested benefits, such as Social Security and Medicaid. The funds in the account can be used for disability-related expenses that assist the beneficiary in increasing and/or maintaining his or her health, independence or quality of life.
Millions of individuals with disabilities and their families are often relegated to a life of poverty as a result of not being allowed to build even the most modest levels of resources. Individuals receiving supports through Social Security, Medicaid and other publically-funded programs are often disqualified from those supports if they have more than $2,000 worth of resources or assets. Now, with the launch of nationwide ABLE programs, individuals with disabilities and their families will be able to take a step to better secure their financial futures and to help offset the often significant financial challenges that can accompany living with a disability.
ABLE TN focuses on efforts to ensure minimal costs associated with establishing and maintaining an ABLE account. Total annual asset-based fees range from 0 percent to 0.63 percent, depending on the investment selections held within an account. There are no sales or distribution charges or fixed account maintenance fees associated with ABLE TN accounts. The total annual asset-based fee includes the underlying investment expenses and program management fee. The annual asset-based fee is divided over 12 months and applied to the account balance at the end of each month.
ABLE TN and the Ohio STABLE Account program are currently the only two programs enrolling beneficiaries in the country, and they are doing so only via their online portals. However, we expect several other states, including Nebraska, Florida and Utah, to be launching their ABLE account programs in the very near future. In fact, both Nebraska (a national plan) and Florida (an in-state only plan) are expected to launch prior to July 1st.
For more information on ABLE TN and how to enroll, please visit www.abletn.gov.
Earlier this month, the Autism Society participated in a briefing on successful employment outcomes for youth with significant disabilities. The program was hosted by the Collaboration to Promote Self-Determination (CPSD), a coalition of 10 disability organizations, including the Autism Society, that advocate for the "modernization of the federal adult system of services and supports for persons with disabilities". The event coincided with the release of The Implications of the Workforce Innovation and Opportunity Act for Seamless Transition of Youth with Significant Disabilities, a policy brief prepared by Richard G. Luecking, Ed.D. for CPSD.
The Government Accountability Office (GAO) is studying the services needed by youth and early intervention services for children on the spectrum. The study is commissioned out of the response of Representative Christopher Smith's office who we worked very closely with to make sure this happened. The first part of the GAO study has been released and finds that federal programs provide a variety of intervention services to young children with autism. The second part of the GAO study on services needed by youth with autism who are transitioning to adulthood will be released in August.
The Interagency Autism Coordinating Committee (IACC) wants your input to help identify priority topics for inclusion in the 2016 IACC Strategic Plan for ASD. The new plan will cover research, services and policy issues related to the 7 Questions covered in the IACC Strategic Plan. Click here to submit your comments. The comment period will be open from June 15, 2016 - July 29, 2016.