Obtaining Services for Adults with Developmental Disabilities

Uploaded by DisabilityLawCenter on 26.11.2012

My name is Hillary Dunn. I’m an attorney here at the Disability Law Center. This discussion
is focused on the needs and services of transition age students (14-22) who likely will look
to the Department of Developmental Services (DDS), formerly known as the Department of
Mental Retardation, for adult services and who have a “severe” or “profound”
intellectual disability, may be non-verbal, have behavioral issues or other complicated
This is not meant to be exhaustive or all inclusive. I’m just hoping to provide some
information and raise your awareness of some issues so you can start planning as early
as possible.
The federal law, IDEA, requires that schools provide transition services. This should include
services focused on improving academic and functional achievement to facilitate the move
from school to any employment opportunities, adult services and community participation.
It should be individualized and include, among other things, community experiences and, when
appropriate, acquisition of daily living skills and functional vocational evaluation.
Massachusetts has a transition law, Chapter 688, that requires the school to make a referral
to the adult service agency that may serve the student after special ed ends. For the
students we’re talking about now, the referral would likely be to DDS. Usually around the
student’s 21st birthday, DDS will work with you, your student, and the school to develop
an Individual Transition Plan (ITP) which describes the types of programs and supports
the individual will need when he/she leaves special ed. The ITP is a separate document
from the transition planning form (TPF) that the school must do starting at 14.
I would suggest making sure your student’s IEP and transition planning form address ADLs,
hygiene and other skills needed for things such as shopping, maybe money handling or
volunteer or employment options. These are skills that the school needs to be working
on. Continue to address any behavioral concerns as well as communication. Everything I have
mentioned so far is key to helping the student access the community as much as possible and
be as independent as possible, which is part of tranistion. The school needs to assist
in helping the student generalize skills across all environments – whether that is in the
school, at home, or out in the community.
Continue doing all the relevant evaluations –such as occupational therapy, speech and
language, functional behavorial assessment, or assistive technology; and seek out transition
age assessments as well that will assess your students functional and/or vocational skills.
Some teachers put together an “all about me” type of a book or portfolio for the
student as they approach 22. I suggest making sure this is as specific as possible about
your child’s needs as well as preferences and interests. This can be a tool for the
transition to adult day and/or residential programming. It is a useful tool to really
engage in person-centered-planning. You could try to get it formalized in some way in the
IEP through the vision statement, parent concerns, or additional information sections as well
as try to utilize the transition planning form.
Some other things to consider:
At 18, you can help your son or daughter apply for Social Security Insurance (SSI). If a
person is eligible for SSI, they are eligible for MassHealth. These issues can get complicated,
for example, around asset limits for SSI, so consult an attorney or financial planner
if you feel that’s best.
If your student uses a communication device or system, a voice output switch, or any assistive
technology or mobility aids or other such equipment, know who is paying for it. If you
have not paid for it yourself or through your insurance and, instead, the school has paid
for it, it stays with the school when the student leaves for adult services. If the
school is paying for it, you need to plan ahead and work with insurance to purchase
the device so that, for example, your student isn’t starting adult services without the
communication system in place. This process with insurance can take several months or
even a year plus.
Regarding special ed placement and programming – make sure that you have your student in
a school program where they are really getting out in the community – whether that’s
for shopping, going out to eat, volunteer opportunities, etc. It is part of transition
services, and it is also important for possible future providers of adult programming to see
the full scale of your student’s abilities, preferences, and expectations for community
By 18, you should be dealing with eligibility for adult services from DDS. The Chapter 688
referral is just that – a referral. It isn’t a determination from DDS that your child is
eligible for adult services. Eligibility isn’t automatic, even if your son or daughter has
very significant needs or received services through DDS as a minor child.
For folks on the autism spectrum who have significant scatter in their testing, primarily
around intellectual functioning, the eligibility process can be very difficult.
If your son or daughter is found eligible for DDS adult services, that does not mean
that you will get all the services you want for your child or feel that your child needs.
Unlike special ed services, there is no entitlement to DDS services, unless you are a specific
class member, such as a Boulet or Ricci class member. DDS services depend upon its funding
allocation from the state legislature.
Ineligibility determinations and determinations around services to be provided are appealable.
When considering programming options for your son or daughter in the adult DDS world, explore
programming through all funding options. I’ll briefly describe some.
DDS provides services that are solely state funded. The continued provision of these services
is dependent upon funding by the legislature of DDS’s budget. DDS also has programming
through 3 MassHealth waivers – the Adult Supports Waiver, Community Living Waiver,
and Adult Residential waiver. There are a limited number of such waivers available.
Finally, there is MassHealth funded day habilitation, which is often where many folks end up receiving
adult services. Under the Medicaid State Plan, these day habs are not part of the DDS budget,
and, if MassHealth finds your child eligible for this, the service is essentially an entitlement.
As I mentioned, day hab is a very common service provided. Whether it’s day hab or other
day programming, make sure to visit and observe the proposed programs and ask that your son
or daughter visit as well. Make sure to consult with various people of all professional levels
at the day program because turnover is an issue, so the person you spoke with on one
visit may not be there a year or 2 later when your child attends the program.
As with all programs, some day habs are better than others, and some do a better job than
others with getting folks into the community to participate in various habilitative, volunteer
and social activities. Please keep in mind that a person with a disability has a right
under the Americans with Disabilities Act to receive services in the most integrated,
least segregated environment possible.
Well before your child is 22, I’d suggest exploring living arrangements and residential
options, even if, at this time, you are planning to have your son or daughter living at home
with you for the near future. You need to start thinking long-term. Are there ways you
could use a Section 8 voucher? Could a shared living or supported living arrangement work
for your son or daughter? If you are considering a group home, be aware that there is often
a long wait for such residential placements, so put some thought into when you want to
request this service, if you decide that a group home is the route you want to take.
Another option is MassHealth-funded adult foster care – this can either be an out
of home placement or a placement in your family home with a designated and approved adult
foster care caregiver. This person cannot also be the guardian.
This is a brief and certainly non-exhaustive discussion of some residential options meant
only to raise the issue. Learn more. There are resources and materials out there through
the Arc and Massachusetts Families Organizing for Change, just to name a couple. You may
also want to consider working with an attorney or financial planner to address life-planning
At 18, your son or daughter is legally emancipated and a legal adult. Regardless of the level
of disability, you are, for example, no longer entitled to be making educational decisions
for your child. You will need to execute a delegation of educational decision-making
authority form, if you and your student want you to remain involved. The form allows you
to chose shared decision making with your student, if they are able to do so, or a full
delegation to the parents can be done.
You may also want to consider the range of options regarding guardianship – a limited
guardianship or a full guardianship – and other less intrusive options such as: conservatorship,
durable power of attorney, any trustee involvement, representative payee for SSI, or Health Care
Thank you for watching, and I wish you and your son or daughter the best of luck as you
go through this transition process.