Paying for Early Childhood Intervention Services
October 1, 2023
Over three million children in the United States had a reported disability according to the 2019 U.S. Census, and that number has risen 0.4% since 2008. Children experiencing developmental delays, not reaching developmental milestones, or those at risk may be eligible for early intervention services and supports.
When to Screen for Developmental Delays
If a child is born prematurely or with a genetic condition, then that child may qualify for early intervention as soon as birth. Early screening is part of the services that should be offered while parents are in the hospital for their child’s birth. However, if a parent becomes concerned about their child’s development after birth or notices any changes, they should refer their child for an early intervention evaluation. Eligibility for services is based on an evaluation of a child’s skills and abilities. A doctor’s referral is not necessary for an evaluation. It’s important for parents to educate themselves on which milestones their children should be reaching and not rely completely on their doctor’s recommendations; it is parents who spend the most time with their children, so they may notice something that a pediatrician won’t catch during a routine check-up. Emma Fitzsimmons, a New York mom who claims early intervention saved her son’s life, tells other parents, “If you’re worried that your child has delays, I would encourage you to seek out Early Intervention services and to ask for recommendations to find the best therapists in your area and a good service coordinator, the person who oversees your case.”
Know What Your State Offers
If eligible for early intervention, children may receive services to help with physical skills (crawling and walking), cognitive functions (thinking and learning), communication (talking and listening), adaptive skills (eating and dressing), and social-emotional development (play). Services are wide-ranging and can include speech therapy, physical or occupational therapy, psychological services, home visits, nutritional services, audiology (for hearing issues), vision therapy, social work, assistive technology, and even transportation.
The Individuals With Disabilities Education Act, or IDEA, covers early intervention and school-aged services. Under Part C of IDEA, funding is made available to each state and requires services to be made available to eligible children with disabilities. While all states offer early intervention, the screening processes and services offered vary state by state. The first step in finding out what your child may qualify for is learning about what your state offers. The CDC offers links for each state in order to learn about the benefits your state offers. Each state has its own guidelines around how families qualify, but generally, a child must exhibit a developmental delay or have been diagnosed with a specific health condition that is known to lead to delays, such as a genetic disorder. The Early Childhood Technical Assistance Center (or ECTA) also outlines the services each state offers. In some states, children may be eligible for services if they are at risk and not yet exhibiting any delays, such as having been born at a low weight. If a child is found eligible for services, a care team will develop an Individualized Family Service Plan (IFSP), which will outline the services a child will receive and the desired outcomes for those services. For instance, physical therapist Tonya McCool explains, “If a child presents with a delay that limits their abilities to complete age-appropriate milestones, a provider will assist by guiding the child into appropriate positions, providing them opportunities to experience new opportunities or helping them try new things so that their families can continue to work with them throughout the week to meet their goals.”
Under IDEA Part C, Child Find services, which include the initial referral, evaluations, the development of the IFSP, and service coordination must be made free to families, but depending on your state’s policies, some services may be provided at a cost or on a sliding scale. In addition to the federal education funds provided through IDEA, Medicaid and private insurance can also help cover the costs of interventions, such as speech therapy and hearing services. Finding a provider that is familiar with Early Intervention funding will know best how to help families cover the costs of these services. Although early intervention is mandated by IDEA and designed to meet the needs of children, it often requires a combination of resources to cover the costs of services. The ECTA’s website offers contact information for each state’s lead agency, who will be able to provide parents with the resources they’ll need to secure services and funding. If your child qualifies for interventional services, it will be important to become educated in what services must be provided at no cost to you through IDEA Part C.
Once a child is three, if they are still experiencing delays or require supports, then services will continue and transition into special education services. These are often provided through a child’s school at no additional cost to you. The age at which a child begins schooling also varies state-by-state, which is why it’s important for families to work with their initial early intervention team in order to ensure children continue receiving the supports they need. When an IFSP is developed, it should include any support for the transition to preschool when a child turns three. Plans should be reviewed every six months, as children change quickly from birth to age three.
Early intervention services can have an enormous impact on a child’s ability to meet developmental milestones. These services are provided not only for a child, but also so that their caregivers have the tools they need to create a healthy environment for their entire family. Insureyouknow.org can help you keep track of medical records, interventional resources, and your child’s IFSP, as well as their progress. When it comes time for your child to start school, having this paperwork organized in one place will help you provide their school with everything they require in order to ensure the necessary continued supports.
Planning for the Care of Your Adult Child on the Spectrum
April 1, 2023
Today marks the start of National Autism Awareness Month. For parents who have children with autism spectrum disorder (or ASD), it is imperative that they begin to plan for their future now. The CDC recently reported that approximately 1 in 36 children in the U.S. is diagnosed with ASD. Though it’s not something anyone wants to think about, every family should prepare for the day they are no longer around to care for their loved ones, especially those with disabilities. The most important part of designing a care plan is to utilize the help of professionals who specialize in the care of special needs. Since the process can be overwhelming,
“It’s essential to work with specialists in this type of planning,” said AndrewKomarow, founder of Planning Across the Spectrum in Connecticut. When working with a specialist, parents should let them know what they want for the child, so that a specialist can tell them what is right for their situation.
For many, the most intimidating portion of planning for the care of a special needs child is likely the financial aspect. People with disabilities usually qualify for Government services, such as Social Security Income (SSI), Social Security Disability Insurance (SSDI) and Medicaid, but sometimes that may not be enough. Many government services have income limitations, so it’s very important to set up supplemental income, such as personal funds and life insurance, properly in order to avoid the disqualification of government aid. A special needs, or supplemental needs, trust will hold the assets of a person with disabilities without costing them their government benefits; another financial option is an ABLE account, that allows savings up to $100,000 without losing government benefits.
When it comes to housing, “It’s more important to look at the individual,” Komarow said. “What interests and supports do they need?” Parents should think beyond their child living in the family home or with other family members. It’s important to consider how independently functioning they are and which communities will best serve their needs. In other words, instead of parents thinking about where they would like to retire, they should be looking at areas that their child can thrive in after they pass away.
There is a trend toward more community-based living, Gordon Homes with WestPoint Financial in Indianapolis points out. “State-administered Medicaid HCBS waiver programs allow people with disabilities to live in a house or apartment,” he said. A planning specialist will know about options such as these and be able to direct parents toward a solution they can be comfortable with, and their children, if able to, should always be brought into this conversation.
Designating a Care Team
How independently functioning a child with ASD is will determine what kind of care team needs to be put in place. A trustee will help to manage the trust on behalf of the child. They should be someone who is responsible, cares about the child, and will outlive the parents. A guardian or conservator would make all of the decisions regarding an individual’s financial and personal affairs. With a power of attorney, both they and the individual will be able to make decisions together. If able, the child should always be included in the decision-making process, because they should feel just as comfortable as their parents are with the designated care team.
Compiling Information for Caregivers
Marianne Ehlert of Protected Tomorrows, who works with families of people on the autism spectrum to plan for adult living, knows that, “Usually, parents or guardians of a teen understand what that child needs.” It will be important to determine whether or not a child will have the skills they need as a young adult to function independently, such as managing finances, scheduling care appointments, managing personal hygiene, and maintaining the shopping, cooking, and cleaning at home. This will also help determine what sort of living conditions they will need. Will they live with family, alone with minimal support, or will they need to live at a full-time care facility? A statement or letter of wishes, though not a legally-binding document, will serve as a guide for those who will care for your child. It should include all of the child’s care instructions, including medical needs, financial benefits, residential arrangements, and even daily routines.
Planning While Your Child is Still Young
When planning happens early, parents can learn about beneficial programs that their child may be eligible for, oftentimes at their own school. A child’s education can actually be designed to support their plans for the future. Special Needs Planning expert Phillip Clark points out that many planning processes focus on the care of the child once the parents are gone, but planning should be focussed on the child thriving both in the future and now. In order to succeed in the future, children need support now that will help them achieve all of their goals. Families should envision what they want for their child and then determine what needs to be done in order to make that happen.
Not only can planning provide caregivers with priceless peace of mind, but it can also lead to the discovery of resources that will help children with ASD flourish now. Since the planning process can be long, Insureyouknow.org can help parents stay organized by storing all of their documents in one place, such as financial information, medical records, and detailed care instructions.