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When care runs out

Parents of developmentally disabled children kids struggle to give them what they need, especially when they grow up.

On this week’s Watch List segment, we’re taking a look at families in which a member has certain disabilities — specifically, parents who have children with severe developmental issues, who often have to fight to get those children what they need.

That’s particularly a problem once those kids become adults. With so many states facing budget crises, it’s only getting harder. At least 22 states have cut spending for people with developmental disabilities — including Indiana. So far, the 2009 federal stimulus plan has helped buffer the impact of those state cuts, but that money runs out this year. Need to Know’s Maria Hinojosa reports on several families in Indiana.


First Look: Coming of age with autism



  • J Cohen

    I just watched this segment on the struggles of parents/families with loved ones who are Intellectually disabled/ developmentally disabled. It angered me to see how misguided the State government officials are in Indiana and how clueless they are about the ramifications of their efforts to have a “balanced budget”. It is horrendous to see the pride they take in being in the “black” fiscally when they are in the red in the human rights arena. Let’s just say that each and every citizen of this country is entitled to the pursuit of happiness without discrimination. How can any state government be proud of balancing their budget on the backs of the most vulnerable population. The element of this struggle that state legislators underestimate is the power and passion of parents, siblings and other advocates to secure a quality of life for their loved ones. Here in the State of Connecticut we have formed a Family Empowerment Task Force to fight for the rights of our loved ones to have a quality of life that is SELF-DETERMINED to the extend that the individual can participate in that life plan. We all have hopes and dreams for ourselves and people with intellectual disabilities are no different. The world needs to wake up and get a grip that our loved ones are living longer and will need supports long after their parents are gone. It is the number one nightmare of parents to be afraid of their child’s fate once they are no longer around to fight for them. What kind of society allows this? Come into our world for a day and you will meet people rich in understanding, compassion and patience who are willing to collaborate, problem solve and fund raise on behalf of their loved ones so the nightmare can go away. Thank you PBS and Need to Know for bringing our struggle into the public view.

  • Parker51

    This report was sloppy. One of the persons profiled is severly mentally ill. Her residential needs are not due to her Developmental Disability. Another is inappropriatly placed in a residential school and could and should live at home and go to his home school. Only the person whom has no free or income based day program to participate in is not receiving services. He is the only legitimate subject of the report and it is his case which needs focussed on. The others stories should be in different stories.

  • Audrey

    If a child cannot be safe for himself and others at home, then that child needs a residential program. The mentally ill child (who also has some developmental delays, per the report) went through repeated psych hospitalizations. The situation remained dangerous. The child and her family still needed that out-of-home placement.

  • jan

    I wanted to review some information about this story but was unable to because my isp’s version of high speed internet is not fast enough and I will never live long enough to listen to four or five words followed by a lengthy pause as the internet tries to get enough whatevers to produce the next four or five words followed by another lengthy pause.

  • Jgr

    I congratulate “Need to Know” for providing a clear and balanced picture of what many families must confront when their child with a significant developmental disability reaches adulthood. As was said on the program -”they are not cute any more”, but they still need care and support. There are no easy answers to the problems that these young people, their families, and directors of state agencies confront. But the problems are real – and most citizens hear about this only in terms of money spent; rather than in terms of the lived experience of the families and young people themselves. I would also point out that most of the costs of community-based services is for personnel – which means jobs. One aspect of this discussion that does not typically get addressed is that state spending for individuals with developmentally disabilities provides the funding jobs in the local area.

    This report is on target, well researched and balanced. It also lets the public known about a large financial and emotional burden that a few families are being told they must fully bear by themselves. It seems that we all should assume our share of the financial weight.

    Finally, I would like to point out that Parker51, like many people, does not understand that “developmental disability” is defined in federal legislation and means – a severe, chronic disability of an individual that-

    (i) is attributable to a mental or physical impairment or combination of mental and physical impairments;
    (ii) is manifested before the individual attains age 22;
    (iii) is likely to continue indefinitely;
    (iv) results in substantial functional limitations in 3 or more of the following areas of major life activity: 1, Self-care, 2 Receptive and expressive language, 3 Learning, 4 Mobility, 5 Self-direction, 6 Capacity for independent living, 7 Economic self-sufficiency; and
    (v) reflects the individual’s need for long-term special services, individualized supports, or other forms of assistance.

  • Frustrated parent

    Providing core services for people with disabilities is clearly not a priority in most states. A state delegate here in Virginia recently introduced legislation to increase the tax on tobacco products to help finance services for the disabled and finally get rid of waiting lists for thousands of people. Obviously raising the price of tobacco would have also discouraged people from smoking, thus saving millions in health care costs and shortened lifespans. Virginia has one of the lowest tobacco state taxes in the country. Unfortunately the bill died in subcommittee as soon as it was introduced. Gee, I wonder if it had anything to do with the chairman and another member of the subcommittee receiving campaign donations from tobacco companies.

  • teachermomtx

    As a public school special education teacher, I commend “Need to Know” for informing viewers about some of the issues faced by the families of persons with severe disabilities. However, I heard no mention of the school district or ‘local education agency’ serving any of the individuals profiled in the story. (It might have been there; I watched on a Friday night and I have a husband, two sons, and a dog.) The school district has a legal responsibility to provide a ‘free and appropriate education’ (FAPE) to all students with disabilities up through and including the school year in which the student is 21 on September 1. (It’s September 1 in my state, the cut-off date by which entering first graders have to be 6. My hunch is that the 2004 reauthorization of the Individuals with Disabilities Education Act (IDEA) lets the individual states set their date.) My point is that most students that we predict will be life-long consumers of services for persons with developmental disabilities would qualify for educational services from their school districts until the end of the regular school year just prior to their 22nd birthdays, not their 18th or 19th birthdays as we might expect. I would like to make several points here. For the sake of clarity, I will use a list.

    1. As the “Need to Know” segment pointed out, services for children are frequently better than services for persons over 21 or 22. Where I live, the public school educational services (across school districts, not just in one or two places) are generally better than services for persons over 22. In my opinion, that is not any reason to push for graduation from high school at age 18 for a student with significant disabilities. Actually, I’ve only seen this happen a couple of times in the past 33 years (1978 was the 1st year the 1st version of IDEA was in effect and the 1st year that I was certified to teach).

    2. The laws that provide services for persons with disabilities are a maze (the nicest word I could think of). Bright, educated, diligent parents have difficulty navigating the mazes (I think plural is actually more appropriate here), as the television article showed. Many school districts have parent support groups and transition specialists. ARC might also be helpful. I suggest that parents find all the free and cheap help that they can to map their course.

    3. Under versions of IDEA prior to the 2004 reauthorization, school districts could, under certain circumstances, pay for residential placements for students. This might be still be possible under the 2004 reauthorization, but I honestly don’t know. I’m not an attorney, I don’t deal with this part of the law anymore, and I never dealt with it much. However, school districts don’t usually pay for residential placements because FAPE is interpreted to mean “reasonably expected to convey education benefit.” There’s more to it than this, but for me, that is the main part. Also, school districts were required to show their plan for bringing the student back to his/her home campus.

    4. Finally, here is my main point. If anyone is still reading, I will type it in all caps (socially inappropriate, I know). THERE IS NO WAY THAT IN THE UNITED STATES OF AMERICA, IN THE YEAR 2011, THAT A 15-YEAR OLD STUDENT SHOULD HAVE BEEN IN HIS FATHER’S TRUCK DURING SCHOOL HOURS ON A SCHOOL DAY. If this student had been in my class yesterday, he would have: Arrived at a general education high school campus. His “short bus” would come to the same traffic circle used by the “regular buses” and at the same time.

    9:00 a.m. Been met at his bus, by his teacher or one of the teaching assistants.
    Walked to the classroom, taken off jacket, put away backpack.
    Participated in calendar activities and weather activities.
    Practiced handwriting.
    Practiced sorting.
    Participated in a discussion reviewing appropriate behavior for going to the symphony.
    10:00 Went to gym for performance by symphony. (Our city has a population of about
    650,000. I suppose its symphomy is considered “second tier”, but we like them.)
    Went a little early and got to walk around the instruments and the musicians. Student
    was greeted by a bass player that remembered him. Listened to concert.
    No one in any of the Life Skills classes had to leave the concert, although a
    few general education students were escorted out by an assistant principal.
    11:30 Back to classroom. Listened to Beethoven, Bach, Copeland, and Handel on Youtube.
    12:00 Lunch in regular cafeteria where all students eat. All students go through the cafeteria
    line with adult assistance, as needed. All eat lunch at regular tables. The kid that is
    still learning to use utensils has his “instruction” in the cafeteria with the other
    students. No general ed. students joined the Life Skills students for lunch
    today (and when it does happen, it has usually been engineered by adults),
    but a college student that visits 1-2 times a week does come to lunch.
    12:45 Back to class. Teacher and assistants have to take data. In 1:1
    arrangement, adults are asking students to perform various skills that are on
    the students’ Individual Educational Plans (IEP).
    Late afternoon-Students play in classroom because it’s cold. They play with a variety of
    balls (beach ball, soccer ball, etc. and construction toys). The teacher
    left the classical music on most of the afternoon, although she didn’t mean
    4:15 Adult escorts to bus. 4:15 is the dismissal time for everyone.

    This is all true. Details omitted for the sake of brevity. OK, the symphony only comes once every two years, but it did perform yesterday. It all seems to be better than the cab of a pick up truck. Monday-Thursday, our students rotate among three life skills teacher for core academic subjects and skills.

  • teachermomtx

    I think there are more comments about the dogs than the kids and it makes me very sad. I AM happy that most of the dogs demonstrated remarkable resilliancy and responded well to warm, nuturing environments; however, I am worried that the general population seems unconcerned about services for persons with disabilities being underfunded and fragmented.

  • Dogandie

    Dear Mr. Cohen…..Bravo and I too share your frustrations as I have been struggling with my Eastern European daughter for years now, with little progress. I am asking that you please make your group public and allow us to join…I am a New Yorker, and for a State that is lauded as the “greatest on earth” I can assure you, they forgot the intellectually disabled. Please let us be part of your struggle, which is a nation-wide struggle. Just to inform other readers, right after the PBS Need to Know, I happened to get the BBC news..a story coming out of Denmark….a young man, 18, tethered to the wall in a Psychiatric Institution there, for over 5 years because he self-harms…..THAT was their answer for protecting him. His poor mother, broken-hearted before a government hearing committee at last brought the situation to light with the assistance of the media, which appears to be the avenue that works. We need more investigative reporting of the quality of PBS….yes, thank you.

  • Laura LeBlanc

    Thank you for your comments. My name is Laura LeBlanc and I am the producer of the piece. There are some things you bring up that I’d like to respond to. First of all, the first person you mention, Sabrina, has what is known as a dual diagnosis, which means she has an intellectual disability and a mental illness as we reported in the piece. Dual diagnoses are not uncommon for people with developmental disabilities. The diagnoses aren’t separate from each other – the second diagnosis is often related to or resulting from the developmental disability. People with dual diagnoses, like Sabrina, often have very complex needs, requiring intensive care.

    As for the boy you say should be cared for at home, Matthew has been, as we said in the piece, in residential care for 10 years. Before a child like Matthew or Sabrina is placed in residential care, a multidisciplinary team of specialists performs a comprehensive evaluation of the child. After the evaluation, a Case Conference Committee, made up of school personnel and the parents, determine what services are appropriate depending on the child’s educational needs. These decisions are re-evaluated at least once a year. So while you may think Matthew would best be served by living at home, a team of professionals has determined that Matthew does need residential care – and they’ve come to that same conclusion for the last 10 years.

    Each of these families profiled either is in danger of losing services or has not been able to get funding for services for their developmentally disabled children, and that’s why they were all included in the piece.

    Again, I appreciate your watching our show and taking the time to offer feedback on the piece.

  • Laura LeBlanc

    Thank you for your detailed comments. My name is Laura LeBlanc and I am the producer of the piece. The boy in the truck is 22, as we reported in the piece, and no longer eligible for educational services.

    And while school districts are required to offer educational services until a child turns 22 by federal law, the law only requires the state pay for residential treatment if the Individual Education Plan agreement says it is necessary. In Sabrina’s case, the Department of Education is saying she has completed 12th grade and they are no longer going to fund her residential care. The Indiana Bureau of Developmental Disabilities so far has refused to fund her current placement once the Department of Education ends funding. And, as we reported, the family has been unable to get Medicaid Waiver funding for adult services.

    Again, I appreciate your watching our show and taking the time to offer feedback on the piece.

  • Disability Mom

    States like Indiana are increasingly moving their Medicaid population into new contracts with for-profit health insurance carriers. Indiana recently auctioned off their CHIP program to Centene. Centene makes about $4 billion a year from similar contracts for Medicaid and Medicare programs around the country, and on average only spends 84% of that on actual services. When a Medicaid population is suddenly moved into a contract with a for-profit insurance carrier, the only way the company can preserve their profit margin is to cut services. Six insurance carriers (UnitedHealth, Wellpoint, Wellcare, Centene, Molina and Amerigroup) are making a profit of $1.1 billion a month from their Medicaid and Medicare contracts.

  • Gayle Luke

    Dear Ms. LeBlanc:

    This is teachermomtx. I am sorry that I misunderstood the current age of the young man. I appreciate the coverage that “Need to Know” is giving to the issue of how to adequately and appropriately fund services for persons with disabilities.

    Thank you,


  • Angela McGinnis

    Unfortunately only us parents mostly are the only ones hearing and seeing this information. We should try to bring more public awareness to this situation. Rally. See facebook, My Home, My Choice, No Punishment.”

  • JDmom

    I have read all the replies with much interest. It is so important for families to speak out. Thank you PBS for doing this piece. My heart just breaks for these children and parents as I have a child (12 years old) with multiple handicaps and developmental disabilities. I have a real worry about his care as he gets older as all parents with special needs children do. I have all ready seen how much money issues play an impact for my son’s care while at school. My son is considered homebound and visits school with a home health care nurse because of his disabilities and we had to fight to get that. The school was so afraid that they would be made to pay for the nurse that they at first wouldn’t allow it. It is sad when money becomes the primary focus as it has.

  • Punker822002

    Some adult programs wil offer their services Pro-bono, which is definitely something that should be looked into at your area providers. In my opinion I think the states really need to push the knowledge of Waivers this is something a child should be signed up for at early childhood. There is so many adults getting out of High School and their families have no knowledge or clue they should have been put on the waiting list many years ago. Alot of adults with disabilities that want to attend an adult program and do not have a waiver and do not qualify for Pro-bono services are looking at paying $300 to $350 a month for just general services at a part time schedule. It is sad because there is so many parents struggling and having to quit their jobs to stay at home, becuase they have no funding or no one to help them while they try to work. It is a cycle that will just continue to cause pain to the parents that try so hard to support a child with a disability. Being a parent in general is a hard task, but when you take on the responsibilities of being a parent of a child with disabilities your responsibilities have multiplied times 10. I commend these parents for all their hard work and dedication to their child as they have become adults.

  • Disappointed in Indiana

    Indiana loves to having red ribbon cutting for new ‘things’. I would love to have black ribbon cuttings for every time a DD agency, school or services to children are cut. Right now we have Senate Bill 218 trying to withdraw services to First Steps children if the parent is unable to pay. First Steps was created because we KNOW that providing services to young children pays off ten fold. It was also created with good will to give all identified children services. I too am the parent of a challenged child, now 24. I have worked, and am still working, to bring awareness and move services forward for all identified individuals but Indiana has lost it’s soul and I find it very sad.

  • Laughinghard

    This is the worst show ever, its like a huge Obama Liberal Agenda Cheerleading show, I have never seen the show take a negative or even mildly critical perspective on Obama, with how much this president is failing your show can’t find one thing wrong with him? REALLY? Is there an objectivity in this show? Are you guys the propaganda wing of the Obama Administration? Your show is a joke. Keep perpetuating your failed liberal agenda, to find the real truth when watching your show just disagree with everything you guys report!

  • Ckelley25

    As the mother of a disabled child who is now an adult, I hadn’tseen any stories or documentaries that discuss what happens to our children who are disabled until I saw this one story that you aired last week. From that story I realized that the benefits these children receive vary from state to state. My daughter and I are from the state of Ohio and my daughter became symptomatic during her junior year of high school. She made it through school and received her high school diploma, but it was rough going as we struggled to find her help. The school she attended provided limited help, and we were told we had to find her help from outside the school system. After some time had gone by she was diagnosed, and eventually labeled as disabled.

    That very last sentence in the response to the story of the young man who had help as a child, but now has become an adult, touched me deeply. There is not a day that goes by that I don’t worry about what will happen to my adult disabled daughter when I am gone and can no longer fight the “system” on her behalf. We live in a country that claims it protects and looks out for those that can’t help themselves. People need to know that once you are diagnosed as “disabled” not only do you have to do battle with the disability itself, but you have to fight the system to defend the status of your disability. There are all kinds of little traps to remove the disabled from the “system”. The disabled are bombarded with redundant paperwork which might work to serve a person who is only temporarily disabled. And the same paperwork applies to the temporarily disabled that applies to the permanently disabled. Every year here comes this paperwork asking the same questions over and over as to whether one is still disabled. If you are late sending the paperwork in you loose your benefits. I’ve seen the paperwork arrive in the mail with no adequate time for the papers to be filled out and mailed back. This becomes a constant stressful battle of receiving requests for information and having a certain deadline to return it.

    There are case workers who are overloaded with “clients”, whom they are supposed to help and take care of, and these caseworkers or case managers don’t stay around very long, so the disabled are constantly faced with a new case manager over and over. Resulting in a lack of real management of the disabled person. Depending on their disability, if they don’t have some family member or friend to help them they will fall through the cracks in the system and have to start the entire process over or they become homeless.

    There is also the old “We’ve lost your medical records and unless you can provide proof of your disability, you will no longer receive benefits.” That has happened to my daughter once so far. Only because of what I do for a living, did I happen to have sufficient records and medical information that I had saved was I able to re-construct her medical history. I often wonder how many people this has happened to that can’t produce this information and do loose their benefits.

    No one talks about the pressure the system also puts on the disabled to find a job. If you are taking medications that you must take every day to maintain your sense of self, how do you work and maintain a job? I know that it is possible, but it is not easy to do so. I’m not advocating that the disabled can’t work, I’m just saying once they do have a job, then there is just another system of paperwork that they must keep up in order to maintain their disabled status. And again, if you can’t keep up the paperwork required of you, your benefits disappear. Believe me, I’ve only touched on how this works.

    I’d like to see someone do a documentary on the term disabled, both mentally and physically, and explain to the public what the system is and how it works. People would be real surprised at how demeaning and humiliating this system works.
    With the downturn in the economy, I have suffered a pay-cut, a loss of benefits, loss of retirement money, and have had to take money from a nearly depleted retirement account to survive. Plus aging with no “real” medical benefits. I’m too old to make up the lost monies, and anything I could have done to protect my child after I’m gone no longer is possible. This is not a dream this is a nightmare.

  • R Holladay1

    Thank you for you comment. I am Cameron’s mom (Becky), and you are the first person that I have read thier comment, on any of the areas where people can comment, that makes me start saying yes thats it exactly!!!! I just want to say thank you for posting and allowing me to read it and feel like I am not alone in this up hill battle. This is my one big question to the political people that are decideing on the cuts and all ” I am not asking what you are going to do to help my child, I am asking what are you going to do with my child when I am gone?” Because if I am not here to fight the battle then who will?

  • pkarn

    Thank you PBS and Need to Know for putting faces and stories to the real cost of “across the board” budget cuts. I hope our elected representatives watch this piece and take to heart the impossible choices they are forcing families to consider. For too long the struggles of families trying to care for their disabled loved ones has been out of sight and out of mind. As a society, our top priority should be to care for our members that are most vulnerable; children, elderly and the disabled.