Legal issues for special needs children
August 12, 2010 9:59 AM   Subscribe

As a parent of a special needs child, what are some legal issues you wish someone had told you about before you had to deal with them?

I have been asked to give a presentation to a group of parents of children with Kabuki syndrome about the legal issues facing parents of children with special needs.

I'm a lawyer, so this is broadly within my competence, but family law isn't exactly my practice area. What I'm looking for here are not legal solutions--they'll have to figure out those on their own--but broad topics that parents should know about.

Things I've come up with already:
- Working with school districts (IDEA, IEPs/504 plans, ADA, NCLB, etc.)
- Guardianship/power of attorney
- SSDI/SSI and related benefits issues like DAC
- Estate planning and life insurance
- Implications for divorce

Parents will be coming from more than half a dozen states, so I'm less interested in identifying specific resources than I am in types of resources and what sorts of state agencies or non-profits would know about them. Still, any national agencies or non-profits would be welcome. I already know about COPAA.

One thing I won't be talking about is health insurance. Most of them will already know that that's a big deal, so they won't need any prodding to get on top of that, and there's enough uncertainty about that right now that I think it'd be best to leave that one out. Maybe something like "I know that you already know about health insurance, but what about x, y, and z?"

Thanks, hive mind!
posted by valkyryn to Law & Government (4 answers total) 2 users marked this as a favorite
Best answer: My grandson has Prader Willi Syndrome (PWS) and his mother (my daughter) has worked for the local Board of Mental Retardation and Developmental Disabilities in a variety of professional positions. I think you have done an excellent job of capturing the high priority legal topics. I understand your reserve about the mine field of health insurance--I do not know what to say but some reference to the appropriate regulatory bodies when conflict arises. Also, many States or communities have legal advocacy groups (often free or sliding scale) that can be accessed for a particular issue(or in some cases class action). I think one of the most important things to do very early on is learn about accessing/utilizing the Statutory services of the Local/County/State agency responsible for MR&DD services in your community. As part of Estate planning there is also the issue of anticipating and planning for long term adult residential services (if necessary). My grandson has been on a waiting list for adult residential support since he was an infant. My daughter, being in the field, knows there is a 20+/- year waiting list for independent and supported living for adults.
posted by rmhsinc at 10:22 AM on August 12, 2010

Family Medical Leave Act and other employment accommodations, I think.
posted by SMPA at 10:40 AM on August 12, 2010

What has been invaluable in my work across jurisdictions in doing advocacy work is teaching parents how different issues vary across different jurisdictions and domains.

For example, is access defined by definition of a diagnosis? (of what? e.g. Autism, Autism Spectrum disorder) or by severity of disability and definition of critical needs (what are they, defined by whom, what process)? Or by age? How does this vary (in my case) from province to province depending on the provincial legislative framework and (eg in California) and depending on how the state legislation interacts with the federal legislation (eg with the Lanterman Act, and all of its changes).

On what basis is there a division between educational needs and developmental needs? How is this managed legislatively, and in practice? Many arguments can be made successfully, for example, that intervention must be provided BOTH for educational needs distinct from developmental needs.

How are qualified professionals and accepted interventions approved, and on what basis? What are the turf/biases/financial politics of exclusion for a range of interventions?

What are the avenues of recourse and challenging the decisions/system? What community/online groups should they be linked into?

What are the short term plans for implementation/intervention/advocacy and the long term plans.

What are the family systems resources available for the family? I don't know one family with a special needs child that couldn't use more supports here. Respite, housekeeping, leisure, family activities, individual/family counselling.

I know these are beyond purely legislative frames (except for here in Alberta where pretty much all of these are in legislation), but these are the concerns that could in different ways be supported by various policy and legislative frames. This may be well off of the kinds of info you're looking for, but if it's not, feel free to memail me.
posted by kch at 11:54 AM on August 12, 2010

Best answer: Hi, Valkyryn. I am on the board of directors of a patient support organization that just held its biennial family conference (I am affected as are some of my children) and IAAL, to boot.

I think your list covers all of the bases.

I am not at all familiar with Kabuki syndrome but I hope my own anecdotal information is helpful.

The disorder that my organization targets has a lot of variability. The majority of our affected adults (like myself) are fully functional and don't need many (if any) accomodations as adults. But parents seeking guidance and support from our organization need lots of information when their kids are born, need genetic counseling and advice regarding 504 plans and accomodations, etc. There are a few members of our organization who do indeed qualify for partial or full disability as adults, and there are some with very severe forms of the disorder who will need specialized assistance for their entire life.

The problem we've always had with "legal issues" panels is that many of our family conference attendees are attending the conference for the first time, and have very young children. They're still learning about what their future might look like, and are frankly overwhelmed with information. And because we do have a wide range of attendees, information that is interesting to affected adults (who might need to learn about SSDI, etc.) might not even be relevant to a lot of folks attending.

One of the things we notice is that our first-time attendees are often overwhelmed with information, so perhaps a handout summarizing your key issue-spotting takeaways would be very helpful.

For me, the most relevant information was learning about setting up 504 plans. I don't think there was anything in my legal background that really helped us out but it is a pretty intimidating process for many people. Good template documents are VERY helpful, so perhaps other parents (or the organization) might be able to hook people up. While every child's 504 plan needs to accomodate the individual child (special snowflake, etc. etc.) just hearing about the types of accomodations requested by similarly situated parents/children (and the school administrators' reactions to them) can be VERY helpful before the first 504 meeting.

Again, for my own group, I feel that basic estate planning is probably the most important "legal" issue. I think the complexity of the type of trust arrangement you'd want/need would depend on how functional the parents would expect their child to be as an adult. But basic estate planning is a must in any scenario with a special needs child.

Good luck with your presentation. MeMail me if you want to talk more specifics.
posted by QuantumMeruit at 12:27 PM on August 12, 2010 [1 favorite]

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