The Massachusetts DESE/DDS Program for Families of Children with Complex Communication Needs
In my daily work I am engaged with many families who either receive wraparound services from the Massachusetts DESE/DDS Program or are on the waiting list. Currently, there is a lot of misinformation about the program, sometimes being shared by Family Service Navigators or the Agencies that employ them. This seems to be happening more frequently with agencies that are new to providing this service. Here is information that families of AAC users/children with complex communication needs may find helpful.
This is how the program was described by DDS in 2019:
“The Department of Developmental Services has been operating the DESE/DDS Program for more than twenty years, with funding from the Department of Elementary and Secondary Education. This program has provided eligible families of children and young adults a comprehensive array of individually tailored and flexible services, to both provide supports to families of children and to build capacity in families and children who have been identified as needing additional wrap-around supports to potentially avoid a more restrictive educational placement, and to support families in the return of their child from a residential school placement, The DESE/DDS Program presently provides services to approximately 500 families of children and young adults. It has been a very successful program through the years and has provided essential and responsive supports that have made a significant difference in supporting families to keep their child at home and avoid more costly out-of-home school placements.” -QUALIFYING LIST FOR DESE/DDS PROGRAM
· This program is designed to assist children who are at risk of being placed in a residential educational setting. Typically this means that the care of the child is now or could become overwhelming to the family, which could lead to the child needing to live outside the home. If one or more adults in your family were to become ill, injured or incapacitated would your child be able to be cared for in home? If you would struggle to provide care for your child in that situation then it is likely you qualify for the DESE/DDS program. (This is just a way to think about need, not the actual formula for acceptance to the program!)
· The level of care your child needs plays a large part in eligibility for this program. This care may be physical, emotional, medical, behavioral or any combinations of these or other care needs.
· The program is intended to be participant directed, meaning the family and the child should be making decisions about how to spend the money and use the services provided to support the child. These are family decisions. The role of your navigator or family service agency is to support your priorities.
· This program is entered through a closed referral system, meaning your child must already be in DDS to be considered for the program.
· Children must be age 6-17 to start in the program. They may stay in the program until age 22 or leaving school. They must remain DDS eligible to remain in the program.
· Your child will be terminated from the program if enrolled in a residential educational setting
· You must provide DDS/the family service agency with all relevant paperwork including evaluations, IEPs, and insurance information if asked.
· The program requires the child receive approximately 3-6 hours per week of direct service and/or skills training.
· After the first year, you may choose a Provider Assist Model or a Self-Directed Model. All family service agencies are REQUIRED to offer the Self-Directed Model. Please ask, as they typically assume they you want the Provider Assist Model. You have the right to direct your own grant if you wish after one year in the program.
Responsibilities of the Family Service Agency (when using the Provider Assist Model)
· Your family service agency must, at the very least, speak with you directly once a month and visit your home twice a year while the child is present. They may offer more support depending on your needs. Their support should be to assist you in caring for your child.
· Your family service agency must assist you in creating a budget. Ultimately, the budget should be based on your child’s and family’s needs.
· Keep you informed about IRS reporting requirements of your budget
· Assist you in identifying and arranging supportive services, if you wish
· Monitoring and keeping you informed about service delivery, spending and your budget
· Work with DDS to ensure program quality and integrity
· Keep current records
· Complete all reports and paperwork DDS requires of them
· Support families who self-direct with paperwork, paying employees, etc
· Provide services listed in the family’s budget. This can include providing staff, hiring/vetting/paying staff chosen by the family, by hiring them as agency employees or treating them as independent contractors
· Assisting in the use and monitoring of any flexible funding, incidental funding and purchases/reimbursement
Correcting Common Myths
· This program is NOT the autism waiver.
· This program is NOT the Intensive Flexible Family Supports program. (Some family support agencies seem to think the rules and purpose of DESE/DDS and IFFS are the same, they are not.)
· This program is NOT limited to children in need of behavioral interventions.
· This program is NOT limited to children who are medically fragile.
· If you are accepted into the grant you do not have to have a family service agency coordinate your use of the programming (the Provider Assist Model) after the first year. There are options to self-navigate this grant (self-direct model), which means less of your grant goes to an agency, but more of your time will be spent on things like receipts, reimbursements, time sheets, etc. You must be approved by DDS to do this. If you know what you need, who you want to hire, and can navigate the system well, plus you have time/organizational skills for the paperwork consider self-directed.
· You do not have to have a BCBA (Board Certified Behavior Analyst) as part of your service team at all, and you definitely don’t need them to run your service team. (This was recently confirmed by a DDS contact.) You do NOT need to have a BCBA as part of your team or running your program. Any senior level therapist can write the goals and supervise skills trainers.
· You do not have to use employees of the navigation agency as part of your team. If the agency has therapists, caregivers, skills trainers and you wish to use them that is fine. However, you may also find your own team members. Many agencies assume you will use their staff, especially skills trainers, you do NOT have to do this.
· Entering this program does NOT mean you are saying you are willing to place your child in a residential school, it means that you are explicitly working to prevent that.
· Your child does NOT have to be enrolled in MassHealth to use this program
Bid Solicitation in CommBuys website attachments which includes a program description and list of qualifications for non-profit agencies to direct the use of DESE/DDS Program Funding https://www.commbuys.com/bso/external/bidDetail.sdo?bidId=BD-18-1023-1023C-1023L-23182
DESE/DDS Program Requirements http://www.publicpartnerships.com/programs/Massachusetts/DESE/documents/DESE%20Program%20Requirements.pdf
Family Support Program Manual and Guidelines by DDS https://www.mass.gov/doc/2019-family-support-program-manual-and-guidelines/download#page93