My Statement for the Record: Policy Options for Improving SSI

Policy Options for Improving SSI
Tuesday, 21 September 2021

My service dog performing an alert while playing in the yard.

Tasks My Service Dog Sally Storm Performs:

• Rouses me when I am hyper-focused or have hypersomnia 4–6 times a day so that I am able to eat, refill my hydration, do my PT, and bring her out so we can get some fresh air.
• Alerts not only to door knocks, water kettles, alarms, sirens, alerts, and notifications, but also gives me a general situational awareness of my surroundings that I am bereft of when I have to leave her behind. To not have it at home would leave me very, very anxious. I know when I am safe (or not) because Sally tells me.
• Sally retrieves and returns items to me by name, when given the command. Dropped or ‘searched’ items. List grows.
• When I am having a panic attack or starting to get upset, Sally immediately comes and either gets in my lap or lays down beside my leg, depending on my pain level (and where I’m sitting), and provides pressure to chest or leg while nudging my hand to encourage me to pet her. (This helps me slow down, breath easier, and be better able to focus. Sally uses this skill several times a day, since my TBI makes it difficult to think clearly sometimes.)
• Does a circuit around the apartment several times a day, checking to see if I’m ‘lost’. Nudges my leg until I respond if I am.
• Goes paws-up to assist me in reaching her leash, or anything she may be carrying. On command and spontaneous.
• Wakes for fire alarm. Wakes me for fire alarm. Is relentless. (Water kettle/stove alerts are 70% of this level.)
• In group settings, will indicate who is speaking, if she is on my lap.
• Reminds me to eat. She gets my attention then goes to her food bowl, and sits. She repeats this until I eat. She goes waggy and eats her food. At least once daily.
• She reminds me to move to the bed if I fall asleep on the couch. She will nudge me until I wake up and try to get me to move. Several times a week.

I am on SSI, I am multiply disabled. I am latedeaf from a moderate TBI in 2010, I have the genetic connective tissue disorder Vascular Ehlers Danlos Syndrome, fibromyalgia, autism, thyroid disorder, asthma, migraines, PTSD, and many of the expected co-morbidities. I’m allergic to penicillin, Trovan, latex (and many related fruits & vegetables), sulfas, nickel, fragrance, shellfish, and dairy protein. I’m gluten ‘sensitive’, which means I can’t touch it. I’m walking disabled, had a left ulner nerve displacement (left hand nerve damage), and have lifelong glove and stocking neuropathy, and daily joint subluxations. The TBI left me with short term memory disorder, cognitive disfunction, expressive aphasia, severe tinnitus, inability to reach former memories, a new way of forming memories… I try very hard every day. I stay within my very small budget.

I was homeless for a long time both before and after I was on SSI. I got a housing voucher through BRAP (I’ve been on the Section 8 waiting list for years). At first it was 50% of my income, to ‘teach us budgeting’. During Covid, it dropped to 40% (my portion went up $10 this month, next month another $2, no one will say why except that the rent was raised; my income didn’t change…). I pay my electricity, phone, insurance, all out of pocket. I also cover my pain medication.

After play with a toy lobster

Sally Storm is my 3rd fully trained service dog. If my Section 18 case manager cannot get my service dog’s insurance approved, I will have to surrender her. We both know this is the likely case, and a plan has been made. I have packed Sally’s things.

I cannot afford the vet bills that even a healthy dog needs to keep her on her maintenance medications (vaccinations, heart worm, flea, tick, etc.). Southern Maine has no vets that I’ve found who will do free or reduced price well visits. There is one charity vet, but they are completely booked and not taking new clients. An emergency vet visit took this year’s vet visit and more from me; my usual vet urged me to wait a week to look at what even they said sounded like a potential fracture; I go there because it’s two blocks away, I have no working vehicle.

I cannot afford the vet bills for the dog who gives me a reason to get up in the morning and makes it possible for me to function in the way I’ve learned to since my moderate TBI. I cannot afford to keep safe the service dog who has kept me safe for 5 years. This is not acceptable. I will do what is right for my service dog, even if it is not what is right for me.

I do not know what I will do without a service dog. I have no one to help me.

If I lived even at poverty level, I could afford vet visits. I could afford to fix my vehicle, if it still can be at this point. I could breathe easier. I might even be able to afford remedial training so that Sally could do public access again, and I would be less anxious in public and when shopping (when my tinnitus makes me very confused).

The scar is visible on her leg, just as the black becomes solid, there’s a line. The other is higher but in the brown.

Even though her home skills are amazing, Sally needs remedial training for public access. Another dog, who was off-leash, ran up behind us and attacked her. I picked her up with her search-and-rescue vest, but the large breed knocked me down to get at Sally. My neighbors saw and pulled the dog off, but Sally still has physical scars 3 years later; the dog’s owner refused to take any responsibility. Sally is now leash reactive. I cannot afford the training, I cannot get help to get the training (due to SSI’s rules), Section 18 (Medicaid TBI specialty) won’t approve the training.

My cupboards are nearly empty. I just ate a lunch of black beans and bell pepper cooked in pork lard, with stale tortilla chips (never waste food). I have plenty rice, I’ll be okay for another week or so with vegetables, but for protein I’m down to my last egg. I’m effectively housebound with my car needing a new braking system (it’s only been moved for plowing for 2 years), so I’m dependent on others for bringing me to get groceries, especially with my dietary needs. I do have SNAP, but using it is an issue. There are no caregivers rated for my level in my area, which apparently means it’s better for liability to leave me without anybody. The Medicaid rideshare is for doctor’s appointments or workfare only, they don’t consider getting food essential.

You can get a ride to spend hours doing benchwork for piece rate, because your form is marked for ‘socialization’, not employment, but not to get groceries, as a disabled person on SSI! They don’t want to ‘mess up your benefits’, after all. They’ll keep your monthly check well under the $80 confusion limit, don’t worry. Goodwill will ‘take care’ of you, for a profit!

I want to live in my apartment without fear of being institutionalized. I want to be able to keep my service dog who I love and who helps me so very much. I want the freedom of a car in Maine, I’m very isolated. I’d like to be able to get more than an ounce of medical marijuana a month for my pain; see if I could function more normally on 2–3oz/month, maybe.

I want to be able to live without every day being about pain and fear.

Please modernize SSI. We’re being forced to make terrible choices. It’s easier to choose between Sally and I eating than having to give her up.

Please write your own letter to the committee before 5 October 2021.

There are millions of us stuck below poverty, without marriage equality, and in need of relief. This budget reconciliation will allow us to live at the poverty level, to work, to marry without losing benefits, to have assets of more than $2k. Please help us.