We need more resources for parents/families with disabled children. I’m a single mom of 4, one who has a rare neuromuscular disease and permanently in a wheelchair. Currently, the SSI amount is not enough to help support a disabled child in this economy. I work full time and receive no government assistance,
Food stamps, section 8 etc. but can’t buy a handicap accessible home bc of the cost. There are not enough programs to help the disabled. I’ve had trouble keeping jobs because my daughter is frequently hospitalized or we travel for treatment and clinical trials etc. Some parents of disabled children can’t work at all and $943/mo is not enough for anyone to live off which is the current SSI amount. Maybe giving food stamp assistance for disabled families and increasing the income threshold or offering more ADA housing programs or handicap accessible vehicle programs (with actual funding to help multiple families) would be a huge change. The fact that the government gives those who sit on their butts without a disability all the food stamps, housing, cash assistance etc is so wrong. Then families actually working full time trying to do their best who then make $50 over the income limit are told they get nothing, cut off!! It’s not right. I’ve always been raised to “kill it and drag it home” and I don’t WANT to live on any govt assistance but unless you’re a parent of a disabled child who has constant needs and risk always losing your job you wouldn’t understand. I was able to finally get a handicap accessible van a couple years ago for her but getting an accessible home is the absolute hard part, especially as a single mother. Also, making the world more accessible should be a focus as well.
Is it that the Cost of Living for those Supporting Disabled is not adequately understood? Cost of Living for those with and the only support for Disabled in each state is different also. Is it Cost of Living for those supporting Disabled not adjusted based on severity or level of supports required for the disabilities? Is it that none of the above is adjusted for rampant inflation across all states including states where the cost of living is a nightmare because of insane fees for every little thing? These states have a hard time attracting low income workers because its impossible for them to survive. Becoming Older or Disabled or disabilities in General can impact anyone at any point in their life and yet they are one of the most underserved protected classes despite ADA, and Fair Housing ACT and despite Diversity Equity and Inclusion policies that often ignored the disabled.
I % 100 percent agree with you. You need to tell your unfortunate story to the editors of the “New Mobility magazine United Spinal Association” disabled community. Get ahold of the editor Ian Ruder (718) 803-3782 #7224 or the RN nurse Jane Wierbicky (800) 962-9629 option #2. I will pray for you and your family and I hope things get better for you. 
I truly believe these people can help you. God Bless.
I agree. I am also a mother of disabled child (now adult), and have also been shocked at how the current system seems designed to encourage poverty and punitive to people who try to work and accrue assets. I have proposed several policies that I feel will reform SSI & disability so that it better serves the people without increased cost to taxpayers.
Provide a safety net for SSI disability recipients to work - Health - Policies for the People
Provide a safety net for disability recipients to work - Liberty / Justice - Policies for the People