Supporting Families & Caregivers
Across A Lifespan
Share Your Family’s Story to Increase Family Support
We need your help. We know that families across Massachusetts are struggling to meet the needs of their loved one with a disability. We know that many families do not receive enough financial support, and that this can create substantial financial and emotional hardship. We know this, but our legislators do not. Which is why five statewide organizations are launching a campaign to substantially increase funding for families who are supporting individuals with disabilities in their homes.
There is a crisis facing many of the eighteen thousand families who support their loved ones at home. The families which face difficulty do not have adequate funding through the Department of Developmental Services (DDS). We can and will provide facts and figures that justify this expenditure, but the most powerful thing our legislators can hear are the life experiences of families like yours. Together, we can communicate the critical need to invest in families, and the incredible potential that will be unleashed when we do.
We are asking you to think about this question: “If family support was truly supportive, what would it look like?” It is important to capture what your life looks like now and what it could look like with more financial support from DDS. Some families have said they could get a job if they had more family support funding; some families say they could pay someone to take over during the night so they could get a full night’s sleep; other families have said they would buy adaptive equipment that would radically change the quality of their loved ones’ life.
We need your story, so that we can communicate the real challenges faced by real families, and the real impact that increasing family support can have on our families and our communities.
We will be using these stories to raise awareness in the general public and in our legislature. You can choose to have your identity remain anonymous or public, and we will fully respect your choices of how we may use this information.
Please consider completing the online survey of guiding questions here, or email us your story. Together, we can make a difference!
For more information, email us at SupportingFamilies@arcmass.org. Thank You!
Supporting Families is a collaboration of The Arc of Massachusetts, Association of Developmental Disabilities Providers, Massachusetts Families Organizing for Change, Advocates for Autism of Massachusetts, Massachusetts Down Syndrome Congress, Autism Speaks, and Massachusetts Developmental Disabilities Council.
After turning 22, Andrew started the Bridges to Work Program at Friendship Home (FH) in Norwell. Through this program he got his job at Not Your Average Joe’s doing food prep. He works Tuesday and Thursday and has been there since April 2012. Andrew loves his job! He also enjoys other programs through FH like Guys Night Out which are one Monday a month. Every month alternates between eating dinner at Friendship Home and hanging out with the guys to watch a movie or sporting event or going out to different restaurants for dinner. He also enjoys Theme Parties one Saturday night a month and weekend outings. This month is Blue Man Group and the Globe Trotters at TD Banknorth Garden.
I am a single parent to 3 children, (ages 9, 10 and 11), my youngest child is a girl and my older 2 are my sons. My oldest son, Riley, is severely autistic, my middle son, Aidan, has some anxiety and my youngest, Charlotte has a global developmental delay that is going into more probing in the coming months. I can only work part time out of the house; which is really one day a week. At a retail job because I have been with the company for years and they are compassionate to my situation they accommodate my schedule. My father passed away last month and was a source of support for me; he was someone to talk to and did what he could to help me and the children. He helped me tremendously when I was in the midst of my divorce. My mother lives in a rest home and while she is cared for, I am the first child on the list if anything should happen. The children are in school during the week, but we have many doctor appointments.
Last year, my family needed to pull together and persevere through some very difficult days. Having an aggressive, non-verbal, 13 year old son with complex medical conditions and another son, 10 years old, also with autism – meant figuring out how to balance the intensive needs of both boys and still find time for my 16 year old daughter, while working to support my family. The challenges increased with a spike in my older son’s behaviors that put him and my family at risk. His school’s systems recommendation was to place him in a residential setting. My son’s behaviors were so interruptive and dangerous that his team at his specialized school for children and adults with autism felt he was not able to learn.