On Rolling Access Funds

All the way back in Feburary I trekked to Annapolis to attend 8hrs of budget hearings. I don't know why I am just writing about this now, over a month later. Due to snomageddon and hearing cancelations, budget hearings had to get smushed to my benefit, although I feel bad for the Secretary and Deputy Secretary of DHMH. It turns out that the developmental disabilities administration (DDA) had its hearings in both the senate and house and mental health administration had its hearing in the senate back to back with an hr lunch break. 9am, 1pm, & 3pm. It also turns out that they went longer then 8hrs. Needless to say it was a LONG day for everyone. I had to guess what time to schedule my paratransit ride for and apparently 5pm was too early. They were still going when I left....

I wanted to focus this post on one program I learned of in the course of the day, a program that I had never heard of, but has been in existence for 20+ years. It's called Low Intensity Support Services (LISS) but until somewhat recently was called rolling access funds. LISS provides one time funds up to $3000 to assist individuals with developmental disabilities in meeting their needs in the community. According to one of the provider's websites, you must

(1) Be a Maryland Resident - Be a verified resident of Maryland (COMAR 0.22.12.05)

(2) Have a Developmental Disability—The individual appears to have a developmental disability, or does not appear to have a developmental disability, but may be eligible for individual support services in accordance with Health-General Article, 7-403 ©, Annotated Code of Maryland (COMAR 10.22.12.05)

(3) Currently not receiving any DDA funded residential services with the exception of Resource Coordination.

Note: Individuals enrolled in a Medicaid waiver program (i.e. Autism Waiver, Living at home, etc.) and children within the Maryland school system should have their needs met by that service system.

This program seemed to be the focus of the DDA senate hearing because the committee chair had recently gotten a call from a constituent who was distraught. According to the regulation (which is not listed on the DDA LISS site) an individual is entitled to apply for LISS funds yearly as long as it is not for the same service. For example, in 2007 you could apply for money to use for respite services for your autistic son so that the rest of your family could go on a 2 week vacation, and that would be it for respite funds, but in 2008 you could apply for LISS funds to purchase and install a sensory swing in your basement.

Now though, due to our budget crisis, DDA arbitrarily decided after 20+ years that instead of being eligible to apply for LISS funds once per year, an individual is only eligible to apply once in their lifetime. The constituent had been turned down for funds, was told that his daughter had used them up already and was frantic. The thing is, neither the DHMH Secretary (the department DDA is housed under) or deputy secretary knew what the regulation was, and when looked up it clearly stated once per year, thus they had no legal right to change the eligibility criteria without first getting the regulation changed. It was quite humorous listening to them try to defend their decision.

I'm writing about this because I am outraged. I am outraged that PWDs and their families aren't told about the services they are entitled to over and over again. Growing up we didn't have a lot of money and often struggled to pay for services I needed that were not covered by insurance (which would have been eligible for LISS). In 9th grade when my back hurt so bad I could cry we could have used LISS funds to pay for my twice weekly massage therapy appointments at $60/hr $120/week. In 12th grade we could have applied for LISS funds so that I did not have to stop horseback riding (also $60/hr) after my parents separated and the divorce lawyer got my horseback riding money. Horses are integral to both my mental stability and spasticity management and that could have kept me out of or lessened the impact of the decent depressive episode I experienced that year (still bitter that my BP got misdiagnosed as ADD for several years).

Heck, we could have used LISS funds to pay for our hotel bill when I had that 2 week stay in MN for my gigantic surgery, and the following year we could have used them to pay for the airplane tickets. Who knows what we could have used LISS funds for when I was itty bitty. The program was around in the 80s.

I was under the impression that LISS funds could only be used for children, but after looking up the program found that this is not the case. It is nice to know that if the program should ever get back on track (g-d forbid it is ever eliminated) it will be there for me should I need. Maybe one day I will have a job and buy a condo and, as I don't anticipate ever exceeding the income limit, I could dip into the LISS program to assist me in obtaining a universally designed kitchen :)