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.
The YMCA in Hanover is one of Andrew’s favorite places. He has enjoyed being a part of the “Lobstars” tennis team for 8 years now. They are a Special Olympics team that practices at the YMCA 2 days a week on Wednesdays and Sundays. The team is fortunate to have sponsors which allows the team to travel to tournaments. Andrew has enjoyed tournaments in Denver, Colorado, Winston-Salem, North Carolina, Atlanta, Georgia and Hilton Head, South Carolina. His Dad is a volunteer coach for the team. Last year, the YMCA started a unified basketball team. Andrew joined the “Hoopstars” team, had a great time and is looking forward to doing it again this year. They play on Tuesday nights.
Last but certainly not least, Andrew loves Special Olympics! He did swim team from 8 yrs old to 18. Then he switched to tennis….which his Dad loved! As I mentioned above, Andrew has really enjoyed his tennis team and the travelling. He also participates in skiing, softball and sailing. Last year he qualified for World Games in Austria in 2017 for skiing. There will be a lottery at a future date to determine the participants for World Games.
In the future, Andrew would like to move into his own place. What those accommodations will be and where they will be is yet to be determined:)
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.
A day in our life starts off with me, mom, sleeping on the couch to ensure that Riley does not set the house on fire by cooking in the oven, or trying to escape and turning my car on. He is very smart and figured out the locks on the doors. He usually wakes up around 4am and almost always has had an accident. Most of the time when he is up at this hour he is in an agitated state and will cry and thrash and bite. He will turn the tv on and other devices to help calm down. I encourage him to take deep breaths. He will lay on the now ripped, stained and sagging couch with me. When Aidan gets up he must stay in his room because if he comes out in the morning near Riley he becomes very upset and will attack him. So Riley and Aidan go the same school and I have to drive them together sometimes. About a month ago, I removed Riley from the cab for safety reasons. I did not feel the staff we comfortable with Riley when they asked me to assist with Riley in getting him on the cab after escalating a situation, I knew things could go wrong. So now I drive him and pick him up. This morning Riley was very upset before even leaving the house and during the 10 minute ride to school he bite me when I was driving. He was trying to reach his brother in the back seat, but I put my arm between him. I run back home to get Charlotte off to school and because I now drive Riley, it interferes with getting Charlotte ready for school. Nearly every day I drive her to a neighboring bus stop that comes a little later.
The plumber pulls into the driveway at that moment, he finally has time to come over after I called him 3 days ago, to fix the slow toilet. Once again, Riley has flushed something down the toilet, this time it was my toothbrush, it is usually some toy that belongs to his siblings. This lovely new behavior used to happen when he was very little, but has now come back this spring and has cost us over $1,500! Then I sat down at my kitchen table with my mountain of paper work and it is huge amount. I have to contact SSI because they are trying to cut my daughters benefits and she has upcoming evaluations and meetings. My dryer was broken for several months and I had to ask friends to wash our clothes. It was pathetic! A friend came over and fixed it for me for free. And it was wonderful! I was going to school full time, but Riley’s needs are too great. I would love to work, but between meetings, doctor appts, it just isn’t possible for my family. I have to rely on state assistance which is a month to month battle. I often wonder what life would be like if Riley was not autistic and I can’t think about it for too long. This world is isolating and restrictive. I am always on edge and my anxiety is to the max. I have met some of my most favorite people in the world because of my son. The individuals that have shown him love, compassion and given their friendship to us have been amazing. I have gone to bed crying and so do my children. My daughter Charlotte has a “safe spot” in the home because in the last month Riley has escalated so much and is now going after her. He wants to bite people when he gets to that state. Currently, I am trying to get Riley placed in a residential home because we can’t live like this anymore. My other children and are suffering and Riley needs more help than I can give him. I can’t being to tell you how much I love my children, but Riley is my first born child, He is my baby and my heart and if this happens I pray that he is safe and doesn’t think I don’t love him. I have to make these decisions alone and face these tough choices. I don’t want Riley to become a monster and be some story on the news. I have to be proactive
Time is one of our biggest challenges. For instance, Max gets home every Friday at 11:45am! I either leave work (an hourly job) or have to pay someone to be here for him. My wages don’t even cover what I pay a babysitter so it’s a strange situation — stay and work more hours, or go home and save some money? Most of our other challenges are typical except that I still like to be here when he gets off the bus from school because I’m not sure he can get into the locked house by himself. So I have to leave work by 2:15pm to do so.
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.
My family was in crisis. We needed expert medical intervention. We counted on his DESE DDS funding to use for behavioral supports and we relied on the resilience and strength of family and community. The struggles were overwhelming but little by little we saw positive changes – my brave and beautiful son got back to solid footing. He is beginning to learn at school and he is able to spend time in his community. These small triumphs allowed us to keep our family together. Today, we still have immense challenges that can rattle us but we are together and lucky for that every day.