Experiences on medicaid?

Submitted by Dismal_Exchange1799 t3_1144ti2 in RhodeIsland

Hi all. I’m 27, disabled, living in PA, and currently have Medicare, SSDI, and Medicaid (keystone first).

I have the home and community waiver here in PA that allows me caregiving hours. I receive 24 hour care because I am considered to have a high level of disability. I use a power chair, breathing support, and have a feeding tube. My disability is progressive and often fatal.

The issue is that I’d like to move. I have incredible Medicaid here in PA (specifically Philly) but I hate living here. I have family in both Boston and Providence.

I’m finding a lot of information about moving and re-applying in the new state you move— however, I’m not finding any info about if you’re on HCBS with caregiving hours like I am.

The problem is that I cannot be without care. I cannot have a lapse in coverage with my level of disability.

I would love to hear peoples experiences on medicaid in Rhode Island. Does RI have a caregiver home and community waiver? Can friends/family be paid to care for you?

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bosmacks t1_j8u8igo wrote

Medicaid is a mess in RI, lack of resources and a LOT of back log and wait times. Not to mention not a lot of places take just Medicaid.

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radioflea t1_j8v3fh4 wrote

The back log is due to the turnover when McKee took office and the low wages at DHS.

The best tip I can give LTSS applicants is to make sure you have someone competent assisting with the application process as the initial application is lengthy.

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RhodyViaWIClamDigger t1_j8vs7gd wrote

I believe there are attorneys wholly qualified to assist. They get it right the first time and succeed 99% on first time. Before you object based on cost, take a pulse on the wait times and rejections on try one in RI. Attorney only takes a modest % of your Medicaid reward. Worth it.

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Dismal_Exchange1799 OP t1_j8u93l5 wrote

I knew this would crush my dreams lol. But the questions had to be asked. Do the major hospitals take Medicaid or brown affiliated things? The good thing about Philly is the major hospitals and universities here take medicaid.

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bosmacks t1_j8ubb42 wrote

I know that Thundermist takes it, and a couple of other health clinics, not sure which hospitals do.

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sc00p401 t1_j8wu1xt wrote

Thundermist is awful. I booked an appointment for emergency dental work, went there and only got a 5-minute exam where they told me the obvious. Then they booked an appointment to do the work I went there to get six months out. They didn't even prescribe antibiotics so I had to get them from my PCP.

Three days before the appointment day I called because I never got a confirmation call, and they claimed the appointment was cancelled the day it was booked. AND THEN I got a text the scheduled day saying I was late for my appointment.

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Historical-Classic43 t1_j8wfslg wrote

why do you even want to move out here?

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Dismal_Exchange1799 OP t1_j8xc34f wrote

My parents are from Providence. I grew up going there a lot. Spent a lot of time there—memories. RI is a lovely little state.

Unfortunately, they moved and raised me in a red state in a small conservative town. And then as an adult, I moved to Philly— which is riddled with crime and corruption. I live in a very “nice” area here and cars are stolen daily, people are murdered, and the cops don’t answer 911. Seriously, 911 will hang up on you. You’ll be on hold for 20+ minutes. It’s absolutely not safe anywhere in this city.

I want to live somewhere that’s cleaner, safer, and beautiful. It may not seem like it to someone that’s from there, but you’re very lucky to live in New England. There’s so much access to education and incredible hospitals. Anytime I’ve visited and spent time with family it’s peaceful and put together. Philly is an absolute dumpster fire.

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Much-Raisin5122 t1_j8ufj3x wrote

Try calling neighborhood member services, they could help you. 401-459-6020

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owsleythehunter t1_j8ung59 wrote

All major hospitals, FQHCs, CMHCs, specialty providers, PCP groups, etc. in RI take Medicaid, whether fee-for-service or managed care. There are plenty of waiver providers as well. Yes, there may be some access issues with certain provider types.

We have a full duals program here that you would likely qualify for, which provides fairly intense care coordination.

There is a lot of reform happening in the LTSS and HCBS spaces here aimed at increasing capacity and quality. Though I’m in tune with specifics.

I wish you the best in finding the resources you need.

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SqueakieDeekie t1_j8us5br wrote

The general vibe in RI is that if you need serious medical or disability support services, it’s worth moving over the line into MA. RI Medicaid is fine, but the provider networks and medical systems and services in RI are sub-par. Massachusetts, particularly in the Boston area, is much better

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AhChingados t1_j8v1747 wrote

Seconding this post. The medical care and services I saw in MA pale in comparison to RI. Housing might be an issue in MA, since it is significantly more expensive. However, the Human Services office is actually funded and if you move first (and have people to give you housing) you may not have to wait too long. There is also the independent living center, they are amazing.

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radioflea t1_j8v2sww wrote

For anyone wondering we have three self direction programs in the state of Rhode Island.

  • Shared Provider Living
  • Personal Choice
  • Independent Provider

Each provide HCBS and slightly different guidelines.

You can learn about each of these programs via DHS and EOHHS.

#TheMoreYouKnow 🌈✨

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Dismal_Exchange1799 OP t1_j8v33dr wrote

Thank you! I did see those on the site I just wasn’t sure if anyone had any personal experience. It’s good to hear them come up. I’m concerned with people saying there’s a huge wait time. In PA I was able to get on right away. From my understanding, my states have medically needy programs, but people saying RI is a mess in this sense has me a tad concerned.

I will definitely call to get more info.

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radioflea t1_j8v3y8v wrote

I am knowledgeable on all three programs, but the best advice I have to any LTSS applicants is to make sure that you have assistance when filling out your application because it is quite lengthy.

One of the three programs has a state wide registry, and I believe the others are looking into also building a registry.

Some states do self direction care better than others because they’ve been doing it for a longer period of time.

If you are looking to move to Rhode Island, and would be seeking independent care, I would also suggest moving to one of the more populated cities because you will have a better opportunity of aligning with a caregiver.

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Dismal_Exchange1799 OP t1_j8v4cds wrote

Yess to all of the above. I will be bringing someone with me when I move who can work some of the care hours I receive— not all since I need 24 hours. So that’s a huge plus. This person helped me fill out my app in PA. Providence is where I’d want to be so I’m hoping finding care there would be easier than in a smaller city.

It’s really great to chat with someone who knows the system. I’ve learned the PA system in and out so it’s a challenge learning a new one.

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radioflea t1_j8v4jx5 wrote

Excellent! I wish you lots of luck with your application process and just keep in mind once you get here because we are live shoulder to shoulder it will be relatively easy to bring on additional caregivers.

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putathorkinit t1_j8v16vu wrote

Check out RIPIN - the folks there may have more insight into this question and be able to help you figure out how to transfer benefits/services if you end up moving here. They do a lot of consumer advocacy/support for health and social services and are a really wonderful organization.

https://ripin.org/about/

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sc00p401 t1_j8u7bvq wrote

Anything related to state assistance in Rhode Island is an absolute nightmare. My girlfriend moved here from CT just over two years ago, has been waiting ever since for her medical card and for SNAP to be transferred.

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Dismal_Exchange1799 OP t1_j8u7lu1 wrote

Oh yikes… yeah it sounds like MA is better with medical assistance but the cost is what’s getting me about moving there over RI.

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bosmacks t1_j8u8mds wrote

RI is a bit cheaper than MA, but not by much anymore.

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Historical-Classic43 t1_j8uxuez wrote

Yes, a family member i know does this, daughter takes care of mother, specifics ; not sure on the process but it can and is done.

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