By Jill Chuckas, MSW
CAA Special Education Advocate
Well, perhaps not completely, but hopefully it won’t feel quite as overwhelming after you are done reading! As advocates, we work with families at all stages of their child’s learning needs. Some families come to us while still in the birth to three system, while others come to us when their child is in high school. Part of our role is to connect families to services that will support their child throughout the life span. And, DDS is one of the agencies that we frequently encourage our families to investigate.
Last week, I had the opportunity to attend a workshop led by the program managers for DDS in my area. There was a wealth of information shared. Will do my best in the paragraphs that follow to share some of what I learned.
The Department of Developmental Services has the third largest budget in the state and is not considered an entitlement agency (which basically means that the current level of funding, or funding at all, may not always be available). Sadly, the Department of Corrections has a higher budget, but that is a post for another time. There are two divisions that offer services for families. The Division for Autism Services has been in existence for just over 5 years and has very limited resources. Currently, there are approximately 70 individuals serviced by this unit and over 200 people on the waiting list. To apply for support in this division, an individual must have an IQ of over 70 and a diagnosis of an autism spectrum disorder. The second unit (and primary wing of DDS) serves individuals with an intellectual disability, which is defined as a person having an IQ of 70 or under.
All families with children who meet one of these two criteria should apply, as soon as possible, for DDS services. There are many reasons for this – and they often are not clear based on the knowledge that funding is limited and waiting lists are long. One of the more critical reasons for applying – and becoming eligible for DDS services – is the large number of connected resources it opens up to families and individuals. From behavioral and clinical supports, to job training, to respite services, to temporary family assistance, to educational advisors, to a friendly voice on the phone who can help you figure out who can help, DDS has a wealth of resources that a DDS eligible individual can have access to. While there is a “legally liable relative” rule for children under the age of 18, there are many non-income based services available as well as some services (such as respite care) that have small fees for access attached.
In order to apply for DDS services, one will need a current psychological evaluation that has a cognitive profile, adaptive functioning and, if applying for the Autism Division services, a current diagnosis of Autism with evaluation data that includes the ADOS, the GARS and/or the Gillian. A current IEP is also requested and any evaluative data that would be helpful to determine if an individual is eligible. Currently in CT, reviews are taking about 2 months – if all paperwork is in order. It is recommended to make a duplicate copy of every document that is submitted and every form that is completed. Applications can be found here: http://www.ct.gov/dds/cwp/view.asp?a=2039&q=533014.
What if you send everything in and you are denied? Appeal, appeal, appeal. Families have told us in the past that their child was not made eligible for one reason or another. Unfortunately, this is fairly common and staff recommend that one file an immediate appeal. A hearing will be scheduled with an impartial hearing officer – no, this is not due process folks! At the hearing, you will have the opportunity to present your documents to the hearing officer and share why you feel your child should be eligible for DDS services and supports. Do bring copies of all the documents you gave to DDS for review and any new documents. Do bring your child to this hearing. Even if your child can only tolerate being in the hearing for a few minutes, often that visual aspect to the hearing will be enough for the hearing officer to rule that your child should be made eligible for DDS services.
Once eligible, the individual’s case will be sent to the regional office liason and a letter will be generated sharing information. You will then have access to the helpline for questions and information about services. Do note that if your child is made eligible prior to the age of 8, at age eight, a letter will be sent to the family requesting additional documents to confirm eligibility. The vast majority of services will begin to kick in when a person is reaching the transition years (age 18+). Prior to turning 18, a letter will be sent out and case managers are assigned that will work with the family on transition needs. From that point on, levels of need will be looked at annually to see the types of assistance that may be needed by the individual. This also accesses the level of funding and services that are made available to that individual.
Also around this time, both Medicaid and SSI (Supplemental Security Income) may come into the picture. An individual who receives direct DDS support from age 21 on, must be Medicaid eligible. Prior to the age of 21, a child may or may not be eligible for Medicaid. Many children may be on their families’ private insurance plan, making them not Medicaid eligible, and can still receive non income based services. But, once they turn 21, they would need to apply and be made eligible for Medicaid. Similar circumstances exist for SSI. It will be important for family members to speak directly with their case manager (again, one should be assigned around the child’s eighteenth birthday) and ask for assistance with the Medicaid and SSI process. They are available to help families complete and review all necessary forms.
An interesting fact – and take away from the workshop – was that many people were not applying for the autism specific division due to the reportedly long waiting period prior to services being received – estimated at 4 years. The presenters encouraged everyone who had a child who may be eligible for this division to apply as soon as possible. Currently, they are working with legislators to make more funding available for this unit, but with such a small number on the waiting list (only about 200 people), the feedback has been that there is not a need. While some may feel that it is not worth their energy to apply for a service that may take years to be received, it is important to note that sheer numbers often translates into political pressure. A secondary aspect that many forget is that DDS is a life long agency. Meaning, that once eligible (except for children under 8 who need additional documentation submitted at age 8), one is always eligible. Your child may not need these services now, but he/she may need them as an adult. Better to have everything in order than never apply.
CAA is in the process of making a DDS binder filled with materials from the workshop that will be available for CAA families to look through, make copies from and access when meeting with their advocate. There is just so much information that it would be impossible to share it all here. The DDS website (www.ct.gov/dds) also appears to be fairly user friendly, so do access it frequently. The presenters assured us that folks will be available to answer questions and even help fill out forms if needed! Good luck and apply today!