Special needs family blog

Monica needed some sleep during school yesterday. She was brought to the school nurse, who then called my wife and asked that Monica be picked up from school and brought home. My wife got angry and said that neither she nor I would take time off from work to bring Monica home just because Monica needs a nap. The nurse said that this school is “not a daycare.” My wife then when on to say that if the school cannot accomodate Monica’s special needs, then the school will need to find another educational program that Monica can attend.

I contacted Monica’s neurologist this afternoon and asked that he provide a note to the school that they should honor Monica’s need for naps. I hope he will explain why she needs those naps sometimes during school time.

It seems like this is another problem that we will have to deal with and overcome in the struggle to integrate our child and future children with disabilities into our local public school? Ever since Kindergarten, Monica has been the pioneer in our local school system in finding barriers and making accomodations for children with disabilities.

Monica takes naps when she is needs them, whether at home, school or elsewhere. Monica’s ability to take these naps is what keeps her body healthy, despite all her problems with seizures. I suspect that because Monica has seizures throughout the day, that she needs more rest than other people without this disorder.

I work at day programs and groups home for developmentally delayed adults and from what I see, these severely disabled adults do require more rest. Or perhaps, we all need more rest, but our responsibilities to work and family prevent us from getting as much rest as our bodies would like.

Legally, Monica has two more years of high school to attend - when she turns 21.

This year, it seems like we have gotten more “hassles” from the school. It makes me wonder why. Are they just “tired” of dealing with my daughter’s special needs? I wish they would be honest and upfront about it. But nothing was mentioned at the IEP this year.

In her Junior year, the school and I will be looking for a day program where she can transition to after graduation. In her Senior year, Monica will spend 2 or 3 days at a day program.

Fortunately, I have secured a part time job with DMR and I get to visit my clients at their day programs, so I get to see the many differences in programs.

One of the Easter Seal day programs has a large, clean, and new facillity. I have only been there twice and the staff seems nice, but they are new. I have heard from colleagues that this facility doesn’t seem to “know what they are doing.” They have also downsized management recently. So, I need to monitor this day program option more closely.

Another program, a franchise day program, crams all their clients into one small room (they seem to try to fit as many people into this little room as they legally can) where the clients sit around all day. So regardless of the client’s special need, they are contained in one area. This place is strictly regimented. When the clients vocalize, they are told to be quiet. No room for the clients to walk around and there is not much to do but watch tv or a movie. No place for my daughter!
Another franchise day program, called Baroco, has a couple facilities in this area. Both have been recommended to me. The one I go to regularly has 6 rooms. Each room has about 5 or 6 clients in it with 2 caregivers. Each room has a sensory room in the corner where most clients do to lie down to take a nap. So clients here get alot of one on one attention. They do lots of craft activities, games and outings. The caregivers and manager are all wonderful. The facility is not new nor large, but the quality of care and involvement with the clients, is the best I have seen.

UCP has a large facility with many large rooms and an equally large client population. They spent big bucks on a large sensory room with all sorts of sensory stimulating items - lights, sound, vibration, and tactile. Staff has always been pleasant with me and one of my clients likes going there. I am not sure what they do for daily activities, so I need to learn more.

I have learned that most of the day programs are franchises. Even though they have a name like UCP, they are not directly overseen by United Cerebral Palsy. So the quality of care may vary greatly some one UCP facility to another, depending on management and funds.

DMR has at least one day program that is run by the State in this region, but I understand that DMR is slowly trying to get out of the day program business and have their clients attend private day programs. This State-run day program currently employs some dedicated caregivers. The facility offers a large common room, a sensory room, and a kitchen/dining area.

I have written another article on preparation for placement in an adult day care program at http://family-friendly-fun.com/adults/day-care.htm

Despite a large state budget surplus, Governor Rell wants to cut funding for assistance for disabled children. Her budget would prevent hundreds of disabled children from transitioning from high school to day programs. This not only would harm the quality of life for disabled children, but will cause an economic disaster for their parents.

Without day programs, parents of disabled children would have to quit their jobs and stay home to take care of their disabled child. How these parents will ever be able to survive financially? Why cut the funding to DMR when there is a multi-billion dollar surplus?

I can’t help but wonder where is Governor Rell’s heart? I wish she would have to meet our children and their parents face to face and explain herself.

At the end of this copy of my letter, I have included responses from negative Governor Rell, a positive response from our Senator Prague, and a non-commital response from Representative Sawyer - all split on party lines.

In response to Governor Jodi’s Rell 2007 budget proposal to cut funding for services for developmentally disabled children in the State of Connecticut, I sent an email, similar to the follow, to both my Senator Edith Prague and Representative Pam Sawyer:

To Governor Rell.

I am writing to request that you please do NOT allow any cut any DMR funding for our children that are leaving high school and need adult day programs. Please see the Hartford Courant article that follows my letter.

My 19 year old daughter is disabled (she is blind, has cerebral palsy, mental retardation, and skull and hand deformities), attending RHAM high school as a Junior this year. She loves school and the peer and adult interaction and activities, especially community outings. This is a major component of her life in society.

I am a proud father and I cannot help but want to share a little bit about my daughter with you. Here is a short biography that I wrote about my daughter Monica. I have worked on this website - http://family-friendly-fun.com since 1997. It contains much free information and resources for families, like mine, with special needs and disabilities.

I also work in occupational therapy with DMR clients in many day programs and group homes and I see first-hand the importance that these day program services provide.

Day programs provide regular community outings, daily social interaction, educational activities, health care and entertainment for our developmentally disabled citizens. These young adults cannot go out into the community on their own. They need support services to stay involved in the community.

Please ensure that funding stays in place so that all our young adults with disabilities will be able to transition immediately from high school to day programs. Without this funding, our developmentally disabled youth will be deprived of much needed social and community life, not to mention the hardship on their parents.

Personally, as the following Courant article mentions, I too will have to stop working to take care of Monica (which I would love to do) but I have no idea how I will make ends meet.

I feel that to even entertain cutting the funding that enables these young adults to stay engaged in society and community life after high school is a shameful idea. I wish Governor Jodi Rell would have to personally face these young adults and their parents and explain what she was planning for them, and take a walk in our shoes just for one day.

On another note, does the State of CT want to face another lawsuit from ARC? Only recently has the state allocated enough funds to trim the waiting list. Now this?

Please help to ensure that funding remains at least intact, if not increase the budget for the benefit of the developmentally disabled young adults in the State of Connecticut - the wealthiest state in the nation.

Thank you
Steve Price, COTA/L

The following is an abstract from an article from the Hartford Courant, article dated March 29, 2007:

But Gov. M. Jodi Rell’s proposed budget includes a $28 million cut in “discretionary services” at DMR (Department of Mental Retardation) . The reduction could threaten Jacquelyn Shrage’s future and that of dozens of other intellectually disabled individuals, advocates said.

The cut would help Rell meet her $3.4 billion, five-year education goals. As a result, only about half of 270 slots for high school graduates transferring to DMR programs would be funded in the year beginning July 1, advocates said, citing information from DMR. The education services are required; the adult services are discretionary, they said.

It also means only about 85 of the estimated 215 slots earmarked for children who “age out” of services provided by the state Department of Children and Families will be able to transfer to DMR for continued services as adults.

“This is creating a whole new waiting list,” said Terry Edelstein, president of the Connecticut Community Providers Association, which represents about 100 agencies supporting people with disabilities, including 65 that help people with intellectual disabilities.

If the legislature fails to restore funding, Edelstein said, parents with disabled children may be forced to quit their jobs to take care of their children at home or find ways to pay others to provide care until a slot becomes available in one of the programs. The cost for such services can range from $5,000 to $50,000 a year, depending on a client’s needs.

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The positive “advocating for putting back funding” response from Senator Edith Prague:

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