We hope you find our resources helpful, we’ve given tips on our experiences and from other families to ease the process. Contact us if you need guidance or have a valuable resource to add to our listings.

Massachusetts State Agencies

Department of Developmental Services (DDS) #1 MUST DO!
DDS is dedicated to supporting individuals with disabilities. Click for an introduction of services available through DDS. It’s important to be connected to DDS to receive family support funding through a Family Support Center. This site breaks down family support centers by region. DDS webpage

Massachusetts Rehabilitation Commission (MRC) MRC is responsible for vocational rehabilitation services, community living services, and eligibility determination for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). 1-800-245-6543 MRC webpage

Department of Public Health/Care Coordination The Division for Children & Youth with Special Health Needs works with families, providers, and others to support children and youth with special health needs ages birth to 22 and their families. They can help provide continuity of care for your family member, they can be an asset in getting resources, additional money you are struggling with, can sit down with you to help fill out important medical documents, help plan for health care transition and so much more. Worth looking at their website. Generally service the medically fragile. The Care Coordinators are bilingual in English and Spanish 1-800-882-1435 DPH Webpage

Federation for Children with Special Needs (FCSN)
Provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. We are committed to listening to and learning from families, and encouraging full participation in community life by all people, especially those with disabilities. FCSN webpage 1-800-331-0688

What we’ve learned: This organization works closely with state agencies and local organizations with one goal in mind. Helping families get empowered. FCSN is very active in our state and a must to save as a favorite, check back often as they offer educational workshops, a yearly conference in Boston and free consultation around the law of educational advocacy.

Family TIES of Massachusetts/Early Intervention in Massachusetts (EI) One of many programs under the FCSN, all coordinators are parents with special needs. Family TIES offers free workshops on how to stay organized with the mounds of papers revolving the educational world. They offer resources and referrals locally, throughout the state and nationally. Family TIES is the central directly for Early Intervention and resources.

EI is a statewide, developmental service provided to families of children ages birth through 3. Children may be eligible if they have developmental difficulties due to disability or if typical development is at risk. Family TIES webpage 1-800-905-TIES (8437)

Family TIES directory of Resources: click here

What we’ve learned: These coordinators are connected throughout the state and can guide families directly to resources and can make direct referrals which can alleviate a lot of stress for families. Family TIES also can match parents to other parents facing similar challenges. The facet of information that Family TIES has to offer is second to none. They are funded by the Department of Public Health and work hand in hand in collaboration. Well known for their free resource guide with resources throughout the state, national and locally. Their website always has the most current version of their directory, but as a parent you can call to get a hard copy mailed to you.

Supplemental Security Income (SSI) and Social Security Disability Income (SSDI) Programs funded by the Social Security Administration that provide benefits to eligible individuals with disabilities. SSI Webpage

Handicap Placards

Massachusetts Registry of Motor Vehicles
Applications for Disabled Parking are available at all branch locations, at the Medical Affairs office, Haymarket branch; and online. Complete the application and have it certified by a medical professional. RMV webpage https://www.mass.gov/disability-plates-and-placards

State Medicaid

MassHealth/Premium Assistance and Keileigh Mulligan Waiver #2 MUST DO!
In Massachusetts, Medicaid and Children’s Health Insurance Program (CHIP) are combined into one program called MassHealth. You can buy into MassHealth called CommonHealth, MH becomes the last payor after your premium insurance covers fees. (MassHealth) 1-888-665-9993 MH webpage

(Premium Assistance) 1-800- 862-4840 webpage

https://www.mass.gov/info-details/masshealth-premium-assistance-pa

(Kaileigh Mulligan Waiver) severely disabled/waiver benefit

The Kaileigh Mulligan Program provides MassHealth services and benefits to certain children with severe special needs who are over the income standards for MassHealth eligibility and require the same level of ongoing nursing and medical needs as a child living in a pediatric nursing home or hospital. There are currently 198 children enrolled in this program. To enroll, call the Mass Health Enrollment Center and ask for Kaileigh Mulligan; or talk to your child’s hospital social worker or case manager. 1-800-841-2900

What we’ve learned: MassHealth pays very well for the disabled in Massachusetts for durable medical equipment, doctor appointments, prescriptions, co-pays and additional medical services needed. IMPORTANT after approval! Call Premium Assistance to get your disabled loved one’s premium portion of insurance covered on a monthly basis, this does NOT happen automatically when enrolling with MassHealth. MH will mail you a monthly check for that portion. Everyone qualifies no matter how much you earn yearly (the refund will vary).


Education

Department of Elementary and Secondary Education
Education accommodates children between the ages of 3 and 21 in the public school system. Check with your local school district for information specific to your area. DOE webpage

Grants (MA)

DDS Autism Waiver (Birth-8 years of age) (your child does not have to have the diagnosis of Autism, only meet criteria) Generally; this waiver opens up in October of every year.

The Autism Waiver allows children to receive Expanded Habilitation, Education, in-home services and supports, such as Applied Behavioral Analysis (ABA) and Floor Time, for a total of up to 3 years. At the conclusion of the 3 years of the intensive in-home services, a child may access ongoing Supplemental Services (for example respite and goods and services, etc.) that meet the child’s needs and help with the transition out of the intensive Autism Waiver Program—until the child’s 9th Birthday. Autism Waiver Webpage

DDS/DESE Residential Prevention Program The DESE/DDS Program is designed to provide in-home and community based therapeutic supports to students ages 6 to 22, who demonstrate a need for services to prevent a more restrictive out of home residential placement. This Program also offers an increased level of support services to families whose student returns from a residential school placement and requires assistance to remain at home. The DESE/DDS Program is administered by the Department of Developmental Services (DDS) with funding from the Department of Elementary and Secondary Education (DESE). Funding for this Program is subject to an annual legislative appropriation from the state budget. DESE Waiver Webpage

What we’ve learned: The importance of staying connected with your childs DDS case manager is essential (they must be enrolled in DDS to apply). When these grants open up they can let you know when they are available and help with filling out the documents. KEEP IN MIND! These grants have very strict guidelines for submission and are only open for a short window. The links provided above are updated by the state when the grants are available to apply for interest. This means you apply for your child you need to wait to see if selected (it’s lottery based). Individuals are not enrolled all at once, it’s a rolling enrollment. Meaning as a child exists the program a new one is selected for that fiscal year. Also, you need to reapply every year if not selected during the fiscal year. Financial help for either of these grants will change your family lives dramatically for the good. DDS fiscal year starts July 1st -June 30th. Maggie our co-president is one of the handful of parents in MA that has been using the self-directed model for the DESE grant for 6 years. This puts a few thousand dollars back into her daughters budget to be used as necessary.

Guardianship/Conservatorship

Conservatorship is a legal proceeding in which an individual or agency (to be known as the “conservator”) is appointed by a court to be responsible for a person who needs assistance in daily living. Check with your child’s high school or your county Superior Court Probate Office for information on Self Help Clinics. This process should start 6 months before the 18th birthday.

What we’ve learned: Timing is a key, schools can help with this process. If, your child is getting ready to have a 3year evaluation the school psychologist and adjustment counselor can assist with filling out the certificate this in turn will cost no money to the families. Don’t share the burden of figuring this out alone, Care Coordination at DPH and or your Case Manager at DDS can sit down and give guidance in filling out the paperwork and help with additional funding.

Massachusetts Court System
The Massachusetts Court System website has information on guardianship for individuals with disabilities. MA Court Webpage

Legal Resources

The ARC of Massachusetts
The ARC assists families with supports and services in the community. 1-781-891-6270 ARC webpage

Disability Law Center of Massachusetts (DLC)
The DLC is a private, non-profit organization responsible for providing protection and advocacy for the rights of Massachusetts residents with disabilities. Boston 1-617-723-8455 DLC Webpage

Additional Resources:

Seven Hills Foundation Located in MA and RI only, provides exceptional integrated clinical, educational and community based supports to children and adults with disabilities. 1-508-755-2340 Webpage

Rare New England RNE aims to bridge the gap between patients and families, clinics and clinicians, and the many resources available to them by existing government programs, advocacy organizations and patient groups, and state agencies, in the New England area. Webpage

Feel free to email us here if you need guidance.