Support Options for Families of Children with Developmental Disabilities

July 1, 2019

CSOC & Other Options

At SCARC, we offer an array of valuable family-support options for the families of children and teens with developmental disabilities. There are several types of the services, from agency-provided support options to self-directed support options, and funding may come from SCARC or the state. While these programs are wonderful for the families who need them, understanding how to access them and what you’re eligible for can get pretty confusing, so we’re going to explore them today to help you determine which services might best meet your needs.

Under 21

If your child is under 21, the family-support services that are available to you are administered by PerformCare, under the Children’s System of Care (CSOC, pronounced “see-sock”) umbrella. CSOC offers a system of supports and services that are designed to maintain and enhance the quality of life of young people with developmental disabilities. The services the System offers includes respite care, educational advocacy, and assistive technology. The respite care component is where SCARC comes in, providing a number of different respite options, including self-directed support options, to meet the varying needs of families who have children with developmental disabilities.

Becoming Qualified to Receive Services

CSOC requires you to go through a process that can be both rigorous and confusing in order to be approved to receive funding for services. This is called an intellectual- or developmental-disability (IDD) determination and it’s different from Social Security Disability. In order to be given a determination, your child must have substantial functional limitation in three or more areas of major life activities.

The application is lengthy and requires that you provide updated evaluations from applicable specialists in order to be considered. SCARC’s Senior Coordinator of Community Services, Daele Phlegar, can help you with the application, which will take about two hours to complete. This checklist may help you prepare to complete the application.

Once your application is complete, it takes 60 days for your application to be reviewed and approved or denied. Unfortunately, you do need to call PerformCare frequently to follow up on your application, as delays often happen and families are regularly asked to provide additional information or documentation. If you are denied, you may appeal the decision. It can be very overwhelming and frustrating, but SCARC is here to help you navigate the process and overcome any barriers you may face.

csoc kidsPrivate Funding

Fortunately, while you’re waiting to be approved for services, SCARC is able to offer you respite services right away. All we require to begin providing your family with agency-hired support and self-directed support options is proof that your child has been diagnosed with a developmental disability.

Types of Respite

SCARC offers agency-hired respite care, self-hired respite, and agency weekend recreation. Whether respite services are provided via private funding through SCARC or through CSOC, each family is entitled to receive one type of service. We can help you determine which option will best meet your needs.

Agency-Hired Respite

The first option is for a trained respite-care worker hired by SCARC who provides in-home or in-community care, companionship, and assistance with activities of daily living (ADL) skills for your son or daughter while you take time for yourself. Through CSOC, you’ll receive 60 hours of agency-hired respite care every 90 days, and you can choose how to use those hours within each 90-day time period. If your agency-hired respite worker is provided through private funds via SCARC, you’ll be eligible to receive 20 hours per month.

Self-Hired Respite

Through our self-directed support options, you may hire your own caregiver, which can be any person over the age of 18 who has been fingerprinted and has taken a Mantoux test. SCARC will reimburse you for the cost of the caregiver, who can be a neighbor, grandparent, or professional caregiver, monthly at a rate of $10 per hour, up to $200 (20 hours) per month. CSOC will reimburse you $11 per hour for up to 60 hours in a 90-day period for a self-hired caregiver.

You can also choose to supplement the funds provided by SCARC or CSOC with your own funds in order to increase your caregiver’s rate of pay—or use the funds provided to you to pay more to your caregiver (which means you’d ultimately receive fewer hours per month). If your child is eligible to receive respite services through CSOC, we coordinate the reimbursement of funds—you simply need to submit a calendar monthly that shows when the caregiver provided care.

Weekend Respite

There are also weekend-recreation programs for children and teens that are provided by SCARC in community-based settings. These programs are an invaluable source of respite for families not receiving agency-hired or self-directed support options. What’s more, they provide children and teens with developmental disabilities with the chance to engage with their peers in fun activities and go on exciting trips! Both agency-weekend recreation programs may be paid for by CSOC or via private funding from SCARC, depending on your child’s eligibility. If you choose the agency-weekend-respite option, your child is eligible to attend all weekend programming regardless of funding source.

  • Just Us Kids: This program is offered three Saturdays per month from 10 am to 3 pm at two locations in Sparta and is available to children aged 5 to 15. The children may stay in Sparta for an on-site program, but more often, they go on all sorts fun field trips, such as the Morris Museum, the Crayola Factory, Chuck E. Cheese’s, bowling, and more! There is no cost to families for any of these activities, and the ratio of children to staff is three to one. Up to nine children may attend at each site, and there are three openings now available in each one.
  • Teen Scene: This program is provided for teens from age 15 up to their 21st There is a teento-staff ratio of four to one, and the program takes place on three Saturdays per month. For the summer months, two Saturdays are from 4 pm to 8 pm while one Saturday is 5:30 pm to 9:30 pm. The teens go on trips weekly, visiting places such as Laser One, Medieval Times, Stokes State Forest, and mini-golf courses. There are two sites for this program, one in Hampton, one in Sparta, and up to 15 teens may attend each program (there are currently three slots open in each of these program sites as well!). All activities are paid for, but the teens often bring their own money so they can buy snacks and/or souvenirs.

Comprehensive Support from SCARC

In addition to assisting you with CSOC’s IDD determination process and providing the above services, SCARC’s Community Services team can also offer all sorts of information, resources, and referrals to help you find the most appropriate services and supports for you. Please check our calendar for upcoming workshops and contact us to learn more about all of the agency-provided and self-directed support options your child may be eligible for.