How to Get Your Special Needs Met
Arkansas provides multiple resources for special needs families, and navigating the system can be overwhelming. Here are a few organizations, programs and scholarship opportunities that are here to help.
By Dwain Hebda
Being a parent can be one of the most rewarding and challenging roles a person can play in their lifetime. When children have special needs, the joys and stressors are multiplied many times over.
In Arkansas, about 0.8 percent of children under 5 and a mean average of 7.3 percent of individuals age 5 to 17 have some sort of disability, according to the 2017 Annual Report of the Institute of Disability at the University of New Hampshire. To help serve this population, the federal government and the state of Arkansas have developed a network of programs and resources to assist parents. These programs are augmented by a vast myriad of organizations and resources within the wider community.
The following is by no means an exhaustive list of these programs but provides a sample of the kinds of resources available to parents as they carry out the sacred and sometimes-overwhelming job of raising a special needs child.
The U.S. Social Security Administration provides two types of disability coverage. They include Supplemental Security Income (SSI), which provides financial benefits to individuals with disabilities, and Social Security Disability Income (SSDI), which may be available to a disabled person after age 22. SSI medical definitions are often used to determine whether a person is disabled and therefore entitled to other benefits as well.
Medicaid is a federal program designed to pay for or defray the cost of medical care among the nation’s low-income populations and the disabled. While still a federal program funded by federal dollars, states have a lot of autonomy when it comes to managing Medicaid programs. Qualifying for Medicaid, a prerequisite for some state and federal programs, generally boils down to income, although there are several waiver programs that look past that.
Another important threshold is the Federal Poverty Guideline, which is used to calculate eligibility for various programs. In 2018, the FPG was $25,100 annually for a family of four.
DIAGNOSTIC & ADVOCACY RESOURCES
The Arkansas Department of Human Services supports a staff of registered nurses, social workers and clerical support under the heading of Title V Children With Special Health Care Needs (CSHCN). This staff exists to help families understand and navigate the many programs that are available to Arkansans with disabilities. Services are provided throughout 16 DHS offices around the state and provide case management for children from birth to 21 years of age. To learn more, visit https://humanservices.arkansas.gov/about-dhs/ddds/childrens-services-information/title-v-children-with-special-health-care-needs-cshcn.
Arkansans with disabilities have rights protected under the law regarding access to employment, education, community integration and self-advocacy/training. Parents are often unaware of these rights or what they mean. Disability Rights Arkansas is an organization that vigorously defends the rights of the disabled in the community on matters ranging from voting to vocational rehabilitation services. If you feel your child’s rights have been violated, or to learn more, visit disabilityrightsar.org.
HEALTH CARE RESOURCES
Research shows the earlier a child is diagnosed, the better the long-term outcome of treatment. First Connections is a state program providing early-childhood intervention to evaluate children from birth through age 3 to determine if developmental disabilities are present. Other than private insurance, all services are paid for through multiple external funding sources. To learn more, visit dhs.arkansas.gov/dds/firstconnectionsweb/#fc-home.
The Dennis Development Center of Arkansas Children’s Hospital provides a full range of diagnostic services. The center serves families with children up to 12 years of age to rule out or identify certain developmental delays. It also provides behavior therapies for patients diagnosed with cognitive or physical development issues. Visit www.archildrens.org/programs-services/a-to-z-services-list/dennis-developmental-center/dennis-developmental-center for more information.
TEFRA a category of Medicaid that provides care to children in their homes rather than in institutions. Children younger than 19 whose income is below the Long Term Care Medicaid Limit and who do not have accountable resources exceeding $2,000 may qualify for TEFRA benefits. This is provided the child meets the definition of disabled according to the Supplemental Security Income (SSI) criteria and meets the medical-necessity requirement for institutional care. Children in families whose household income fluctuates may receive TEFRA benefits in the months when income is within guidelines.
TEFRA premiums are determined according to income in households that bring in 150 percent of FPL annually. Cost may be adjusted in the event of a substantial change in income. For more information, please visit medicaid.mmis.arkansas.gov/general/Programs/Tefra/Tefra.aspx.
Family to Family Health Information Center is a nonprofit family-run organization under the umbrella group Arkansas Disability Coalition. It provides assistance to families of children and youth with special care needs by helping them navigate the maze of health care programs and regulations within the state. Visit www.adcpti.org/content/Programs/Family_2_Family.asp to find out how to access this community resource.
Before discussing alternative education options and programs, it is important that parents understand what they are guaranteed through the public school system under the law. All children, regardless of developmental ability, have the right to a free appropriate public education (FAPE) that has been tailored to their individual needs. You must be included in the creation of your child’s curriculum, called an Individualized Education Program (IEP). Transition services are also required of all public schools to help prepare your child for further education, employment and independent living. Transition education must begin for your child no later than age 16. Visit www.arkansased.gov/divisions/learning-services/special-education to learn more.
An organization with the mission to craft such accessibility in education is the Center for Exceptional Families, based in Jonesboro. The Center works with families of students with disabilities and local school districts to create innovative special education services. See www.thecenterforexceptionalfamilies.org/ for more information.
Parents wishing to place their child in private school should look into the Succeed Scholarship provided through the state department of education. The scholarship enables public school students with disabilities who have an individualized education program a means to attend eligible private schools. Application for the Succeed Scholarship program is required for the limited slots available. To learn more, please visit www.arkansased.gov/divisions/learning-services/special-education/policy-regulations/succeed-scholarship.
As children reach young adulthood, parents may begin to wonder what their child’s future looks like as far the ability to find meaningful employment and earn a fair wage. Project Search, an ACCESS® Initiative in partnership with Arkansas Rehabilitation Services, helps provide those opportunities through innovative job training complete with a nine-month internship program and follow-up assistance in seeking employment. Partner companies make this program available in multiple areas of the state. To learn more, visit projectsearcharkansas.org.