Katrina Piper, whose condition attacks the nerves in her body and eats away at her bodily functions, was allocated a medical bed but it cannot fit in her bedroom with space for her to move around in her wheelchair.

She also waited six months for modifications to her bathroom.

Ms Piper said the delay was causing her physical and emotional stress.

"At the moment I'm just throwing my hands up in the air and saying 'I'm over it, I'm done with it'," she said.

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"I haven't been in a bed for nine months. It's uncomfortable. I'm at risk with pressure sores.

"I haven't got much time left. I'm going to spend that with my family, and doing things out in the community, which is what the NDIS is supposed to be about. At the moment I have to watch my husband stress all the time dealing with the NDIS."

The issues centre on whether her bedroom should be carpeted or not, but Ms Piper said ripping up the carpet would make her room colder and worsen her asthma.

She said there seemed to be a lack of understanding from those working within the National Disability Insurance Agency.

"[They need to] get people that understand what disabilities are, and not just pencil pushers," Ms Piper siad.

"People that get out in real life and see the way that people with disabilities have to live day-to-day, what we have to go through, just daily stuff."

Ms Piper took her concerns to Bass Liberal MHR Bridget Archer, which resulted in one issue being resolved and another being considered. Ms Piper said it was frustrating that people on the NDIS were having to lobby politicians to see basic results.

She told her story at another NDIS forum in Launceston, this time hosted by Labor disability spokesperson Bill Shorten.

He said the federal government's decision to move $4.6 billion in unspent NDIS funds into general revenue was having negative consequences.

"I've met Tasmanians who could desperately use the very modest support to give them some reasonable quality of life," Mr Shorten said.

Ms Archer said the Final Budget Outcome for 2018-19 showed lower NDIS participant costs, that the number of people entering the NDIS was lower than originally estimated, and support package utilisation was low.

She said she would continue to reach out to those facing issues with the NDIS and lobby on their behalf.

A spokesperson for the NDIA said Ms Piper's case was regrettable.

"The NDIA apologises to Ms Piper for the delay, and will continue to work with her to collect all necessary information to ensure the appropriate supports are made available as soon as possible," she said.

"Like any building modification, the timeframe for approval and construction can be dependent on the complexity of the works, however the NDIA works to ensure participants receive supports as soon as possible."