Only fifteen states provide support services to a significant number of families with children who have disabilities, per United Cerebral Palsy’s The Case For Inclusion report. Recently released, it tracks the how well Medicaid programs in all 50 states and the District of Columbia serve those with developmental and intellectual disabilities.
These are the 10 states serving the highest number of families that have kids with disabilities; they include a mix of states with both big and small populations, along with richer and poorer states in terms of median family income (New Hampshire is the second richest, for instance, while Arizona is considered less affluent):
1. Alabama
2. Wisconsin
3. New Hampshire
4. Arizona
5. Montana
6. Louisiana
7. Minnesota
8. Vermont
9. New York
10. California
The states where Medicaid supports the lowers number of families that have kids with special needs: Idaho, Iowa, Arkansas, Illinois and Maine. Sadly, this may not be news if you live in one of those states.
In general, the states providing the best Medicaid services for people with intellectual and developmental disabilities are Arizona, New Hampshire, Oregon, Vermont and California; the lowest-ranking ones are Virginia, Illinois, Texas, Arkansas and Mississippi.
The heartening news is that despite our continuously challenged economy, many states have made real improvements in the quality of services provided—although as the report notes, “There is still work to be in ensuring that kids and adults with intellectual and developmental disabilities can enjoy the same freedoms and quality of life as all Americans.” Especially in terms of the care our children will need down the road; waiting lists for residential and community services remain high.
Support more quality Medicaid programming for those with disabilities by citing this report and contacting your Congressional rep (find contact info here).
Students with special needs nominated to be prom queens and king: It’s happened a lot in recent years. I’ve loved that trend, and whenever teens with different abilities are included in mainstream activities. Sometimes, though, it’s awesome to see kids with special needs banding together and doing their own thing. That’s what happened this Wednesday at Tahquitz High School in Hemet, California, which hosted the first prom for students with special needs in the district.
A special education teacher organized the event, as reported in The Press-Enterprise, which attracted 160 students. They arrived dressed up, posed for prom photos, danced a lot and generally had a great time (you know, like any teens). Not disclosed: Whether anyone spiked the drinks. You know, like any teens.
There were fifty general ed students on hand who’d volunteered for the event, and who surely picked up some valuable lessons. As one told a reporter, ”Don’t judge a book by its cover.” (see a gallery of photos here).
I’d love for Max to experience a prom someday. And if he dances up a storm with the friends he loves at school, well, that would be all sorts of amazing. Especially if he spikes the drinks.
I’ve watched this video of Jack Carroll auditioning for Britain’s Got Talent again and again. Throughout the routine the 14-year-old, who has cerebral palsy, poked fun at himself and the challenges he faces, opening with the line “Don’t worry, I know what you’re thinking: Harry Potter has had a nasty Quidditch accident.”
Jack is genuinely funny, and he’s got great timing, too. One of the judges called him “a comedy genius.” As I watched him perform, I kept thinking: I hope Max can someday make fun of his own cerebral palsy.
If that sounds weird, I can assure you, it’s not something I’d ever put down as one of Max’s therapy goals. But here’s the thing: Jack is able to own his disability. As he said, “A lot of times in comedy, your strengths are your weaknesses.” If you yourself display “the elephant in the room” (as he called it) then it makes people more comfortable.
I think of the gapes and stares Max gets from other kids. And how, if he were able to be self-deprecating, it would make kids more cool with him. Right now, he’s at the stage where he’s becoming aware that he has cerebral palsy. I don’t know when and if he’ll have the awareness to joke about it, I just hope he does.
Yes, I do mind when comedians make people with disabilities the butt of their jokes. That may sound contradictory, but consider this: When a person with disabilities can poke fun at himself, it makes him less of a person to be pitied, less of a victim. He can bust clichés. He can shift the power.
And I want my son to have all the power he can to charge through life.
People with disabilities are twice as likely to become victims of crime as as those without disabilities, per The National Crime Victim Survey. What doesn’t seem to have been studied: How often people with disabilities are likely to be harmed by police who are not aware of how to handle them.
This is an issue recently thrust in to the public eye with the tragic death of Robert Ethan Saylor, a 26-year-old with Down syndrome. As is widely known by now, back in January Saylor was at a movie theater and refused to leave because he wanted to see the next show. After authorities were called, Saylor resisted attempts to be removed and grew agitated. The officers pinned him down on his stomach and handcuffed him, letting up only when Saylor showed signs of distress. His death was ruled a homicide, by asphyxiation.
His death, and the lack of criminal charges pressed against the officers, has caused an uproar in the Down syndrome community. But it’s also been incredibly unsettling to others who have loved ones with disabilities. It’s made parents like me hyper-aware that adults who are unable to communicate as others can, who get upset by certain situations and who may not be able to follow orders are at risk of being considered disobedient by police, risking harm. Max, who has cerebral palsy, will grow up to be that adult, most likely. And what if, even now, he got lost in a crowd? What if he wigged out? What the average policeman know how to handle him? No, I think.
It was heartening to read that this week, New York State rolled out the first ever sensitivity training for police offers to help them better interact with people who have developmental disabilities. Although the First Responders Disability Awareness Training is not mandated by the state, New York’s Developmental Disabilities Planning Council pushed for funding it. Currently, as seems to be the case in other states, New York has no protocol for arresting and charging suspects with developmental disabilities.
The American’s With Disabilities Act website offers publications that inform law enforcers about handling people with disabilities. How many police officers actually read them, or get any training, is a big, worrisome question mark. Sometimes, decency and common sense alone won’t help.
I have enough concerns about how my son will navigate this world as he grows up. I hope that authorities in cities and states around the country learn from the tragedy of Robert Ethan Saylor and, in the coming years, start training their police to better understand people with disabilities—and do right by them.
Hopefully, non-profits that advocate for the disabled will keep pushing for this. People who have loved ones with disabilities can call their local police precincts and ask for this. Meanwhile, I’ll be holding Max’s hand extra tightly when we’re out.
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.
Norrin was diagnosed with autism when he was 2 years 5 months old – right around the age most kids start potty training. But at the time Norrin was diagnosed, he couldn’t even point his finger.
Or clap his hands.
Or wave hello/goodbye.
Or speak.
While potty training should have been at the bottom of the list of things I wanted Norrin to learn, there was this desire to be like a typical parent – for him to be a typical kid. And I wanted to start potty training Norrin at the age the other parents did. So a few months after the therapists started working with Norrin – we started.
And then we stopped. Because potty training a kid who couldn’t speak or have the motor coordination to clap, point, wave can be…difficult (among other things).
I realized that with everything else, I needed to take potty training step by step. So if you’re thinking of potty training your kid with autism – here are some things to keep in mind:
1. Ignore what the other kids/parents are doing. Parents of typical kids love to talk about potty training – how they did it and how long it took them. I remember talking to one mom who expressed her frustration with the process because it took a whole two weeks. And I felt like a failure because we had been working on potty training for months (with little success). I couldn’t think about other kids. I had to concentrate on mine.
2. Start when your child is ready. Aside from being emotionally ready, they need to be physically ready. One of the things our Applied Behavior Analysis (ABA) therapist stressed was Norrin learning how to to pull down his pants and underwear. Think about all the physical movement required to use the bathroom especially for boys. Potty training requires a certain amount of independence and if a child cannot remove his undergarments to go to the bathroom then it may be best to hold off until they can.
3. Everyone needs to be on board. When we started potty training Norrin, we started at home. We communicated with his teachers about potty training and asked for tips. We used to send Norrin to school wearing underwear with a Pull-Up underneath. Once he got to school – the Pull-Up was removed and his teachers took him to the bathroom throughout the day. Pull-Ups that have side openings worked best for potty training as it allowed teachers to remove it without removing all the clothing. It was a collaborative effort.
4. You need to be consistent. Once you determine your child is ready. Once you get everyone on board – teachers, sitters, grandparents – whoever. You need to be consistent. So even when you’re out and about on the weekends, even if your child has a Pull-Up on (just in case), take them to the bathroom – get them accustomed to public restrooms.
5. Be patient. It took us more than two years to potty train Norrin. Don’t think potty training will take a week, two weeks, or a month. Do not put your child (or yourself) on a deadline. Start when you start and finish when you finish.
6. Have a sense of humor. Potty training is messy business (so be sure to stock up on paper towels and cleaning wipes). Accept it. Laugh it off whenever possible. Though I know, sometimes it can be hard. If you want to laugh at one of our potty training adventures, check out this post - Norrin and the Royal Flushing Privies.
Norrin is 7-years-old. He’s fully potty trained during the day. Yes he still needs help (with buttons and zippers and cleaning), and he still needs prompting (washing hands). Night time potty training is a whole other ball game. We’re not even trying. And I’m not going stress about it, because I’m sure Norrin will get it. In his own time.
Only fifteen states provide support services to a significant number of families with children who have disabilities, per United Cerebral Palsy’s The Case For Inclusion report. Recently released, it tracks the how well Medicaid programs in all 50 states and the District of Columbia serve those with developmental and intellectual disabilities.
